Posted , 11 users are following.
My PA thinks I may have it by visual observation only and wants to do a biopsy to find out. Hmmmm I'm 75 and not too thrilled about that.
I have no itching or any burning - she is just going on a little shiny bit and some redness.
Thanks.
0 likes, 53 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Kat94 ro77360
Posted
yes! I was diagnosed when my doctor found lighter coloured skin down there and a biopsy confirmed it was LS. i dont have any itchig or burning. im 25 and diagnosed about 3 years ago.
i havent heard of someone else who only has visual symptoms like myself. After being on this forum for a few years now, i feel like the bad symptoms are just around the corner.....?
i do find that around my period it feels slightly tingly down there, but not intensely itchy like others describe.
Joannwilson ro77360
Posted
Oh and I did not have the "usual" symptoms either. I just had irritation feeling , in the beginning. The best way I can explain it is you know how you don't think about having saliva in your mouth and swallowing it until you get a sore throat and it hurts every time you swallow so you try not to swallow? Then you realize how many times you automatically swallow and you start spitting out the saliva instead ?
Then when your throat gets better you go back to not being aware. That is kind of how mine was. I guess it was hormonal changes would set off an uncomfortable feeling where i just felt an abnormal feeling in a place I rarely thought of unless I had a Urinary Tract Infection which they kept thinking was what I had. Then I got tested for Human Papiloma Virus and those tests were negative so they tested my DNA for that and thankfully i did not have the HPV genes either.
So I kept bugging the Internal Medicine, Gynecology, and Urology Clinics until finally i was referred to a Urogynecologist. Which I had never even heard of.
Then i googled the info on LS and found this site and learned more.
Sorry such a long post but it does help to know the facts and people who have experienced the same are the best teachers.
sue162 ro77360
Posted
I am the same as you ro no white patches or itching touch wood but shiney and redness. I had a biopsy well three at the same time different areas and it came back unconclusive, they diagnosed by visual and the fact dermovate worked. It got rid of the shiney and returned it to pink. Im like deethebee I got a tide mark white just inside the majorca and the dermovate turned it dark brown. Im with her not sure I would do a biopsy at that age either unless obviously anything looked suspicious, they are ver uncomfortable and my area was black and blue and puffed up after it. You could try steroid and see if it returns it pink, mine is lack of oestrogen too though as Im sure yours is too.
christine97462 ro77360
Posted
I'm 59 and I declined the biopsy. I asked the doctor if it would be painful and she said it would be very uncomfortabel. She was fine with not doing it and said if the treatment didn't work, we could revisit the possibility of the biopsy. It took a while, but the treatment worked (along with all natural moisturizer I made myself). So no biopsy for me.
ro77360 christine97462
Posted
Christine, what was your treatment?
Thanks.
pamela70431 ro77360
Posted
i am one of these people who ends up in the worst case scenario bracket. my GP initially referred my condition as having
a ' senile vagina ' . She thought that was funny. I was 42 at the time. I had a surgically induced menopause when i was 27.
I have to say that these past 10 yrs have been actually quite horrific. My skin reacts quickly to treatments, then just as quickly adapts to the treatments. My gynaecologist is a lovely man who treats me like a treasured friend and calls
me his "most challenging case " !! i have a regime now where i have umpteen lotions and potions of varying strengths and i alternate them almost weekly. i can say that this month i had 1 day where i had absolutely no itch , nothing that drew my attention to that area at all. BLISS !!! I have no sex life because it is way too painful to attempt it now as my skin is so friable that it often rips especially at the tip of my labia and around the perineum and anus. i would not wish this condition on my worst enemy. The more i learn about this condition the less optimistic i am of ever having a normal life again.
I am extremely fortunate to be married to a man who is pretty amazing. however at my age i should be having a loving sexual relationship not a loving platonic one. i sincerely hope you all have this condition in a hugely less extent than mine.
Autoimmune conditions are vile. The knock on effect alone is cruel. Feel better every one.
sue162 ro77360
Posted
I also use Yes moisturiser which you can now get in Superdrug rather than having to get the chemist to order it in. It is on prescription now as well as it has been proven to work for atrophy.
christine97462 ro77360
Posted
My treatment was the clobetesol ointment. Daily until under control, then 3x/week. I then, after 1 year was able to change to the Tacrolimus Ointment 0.1%. The first time I tried it burned so I waited until I was healed. Then tried again. Was able to tolerate the "heat" (my gyn said it should only last a week but for me lasted only about 2 days). Now I am on that 2x daily indefinitely. Every time I use the bathroom I use a serum that I made (studying to be a certified aromatherapist) 1 oz organic jojoba with 5 drops organic helichrysum essential oil. The white patches are gone, the red, raw skin is gone but I still have fusing. We'll see how that goes...
beverly52803 ro77360
Posted
ro, the only itching I had was internal and fleeting but LS does not affect women internally. I'm quite sure it was bacterial. Went to the gyn to deal with that and ended up with an LS diagnosis based upon what she saw. I did see the thin white line between the buttocks that she mentioned, some white discoloration on the edge of the labia that had actually gotten smaller and possibly a bit of shiny whiteness inside a side of the labia majora (still not sure about that one). The exam took quite a while . I assume LS doesn't look exactly the same on everyone. She prescribed a steroid along for LS and hormone cream for AV (which I knew I had, but was hoping to avoid using hormones because of BC in my family).
All was going well for about 6 months. I then started experiencing a strange "buzzing" feeling on the clitoral hood. The gyn checked & said everything looked fine. However, women on this site have since said that feeling was a definite indication of active LS. I contacted the gyn and was told it was fine to use the steroid there. Have been doing so as often as twice a day when I have that feeling. It seems to be controlling it. I hope to be able to see my gyn in May when I return home.
So regarding an actual itch, I can't say I have had one. My gyn said she has seen older women in terrible shape that have never had any symptoms to make them aware anything was wrong.
ro77360 beverly52803
Posted
Very interesting.
Thank you.
Re: the buzzing feeling, I noticed when I wear tight pants, a strange swelling feeling. Different from the way it used to feel.
karen23320 ro77360
Posted
RO- Don't wear tight pants or spandex or anything that constricts. That throbbing or swelling sensation is an LS reaction, just like the buzzing in the clitoris. I have been symptom free and feeling great since OCTOBER. Then it was rodeo season and I wore tight blue jEANS several times and had my first flare- up! I had the swelling feeling, started to get a little itch and left labia got red and inflamed. Lasted 3 weeks and is finally settling down. no underwear at night, back to dresses at work ( with undies of course!) and put a dab of CLOB ON IT DAILY, along with my friend Emuaid and things are much calmer now. This condition doesn't ho away, but os manageable with dietary changes, AI supplement additions, looser clothing and babying that area.
Joannwilson beverly52803
Posted
My goodness! I am so glad to read this! I have had that buzzing feeling as well and thought i was crazy! I never would have connected it!
Seriously, I thought at first maybe it was some kind of muscle or nerve spasm.
So many times we do not even speak up out of fear of embarrasment.
Having never even heard of any of this i kept it to myself.
THANKS
ro77360 Joannwilson
Posted
Wow. Joann and Karen, we are learning so much here! Thank you so much.
I was just dismissing that weird sensation as "nothing."
I wonder about tightly crossing my legs as I always do.....is that an irritant, too?
Also, aren't there other symptoms of LS involving urinary issues?
Maybe that's another arrow in my urgency quiver???
beverly52803 Joannwilson
Posted
It's ridiculous for any of us to be embarrassed by any of it. Really, women have to get over that. Our culture says sexual anything is wrong yet we are barraged by sexual images, movies, advertising, crimes, etc constantly. The vulva is a pretty critical part of the body. How does the species reproduce without it? Not our fault something has gone wrong with ours. Oddly, even some doctors seem embarrassed dealing with it. I'm talking about it, reading about it and asking as many questions as I can. But I have to say, the bottom line is all we have are steroids to control it. The disease does not get cured.
I finally found something on LS on the site mria posted. It took forever as the search box doesn't work. Let's see if the moderator blocks it when I post. Mria's wasn't.
beverly52803 Joannwilson
Posted
Well, no surprise the link I posted was blocked. A link to the same site that mria successfully posted I might add . If you folks want to be able to access these informative links you have to contact the moderator about his blocking them.
karen23320 ro77360
Posted
Ro- Funny you should mention that! For the last year or so I have been dealing with what I thought was urinary incontinence when I SNEEZED, coughed, lifted something heavy, etc. I thought it was just aging and having 3 kids in four years. I felt an urge to go all the time and would hv to use a weighted insert called Impressa when I ran. My clit was very sensitive and I would put a couple cotton makeup remover pads in my undies to cushion it. Pants drove me crazy and I got more and more sore down there. I too went to the Gyn and she thought I had HERPES, it was so sore! All StD tests came back negative ( I could hv told her that, married 25 yrs., was a virgin with my husband). Biopsy tested positive for LS. Since treating my LS with dietary changes, adding AUTOimmune supplements and steroid/ moisturizer use, I now have NO symptoms of urinary incontinence or urges/ full bladder feeling. I think it was the LS all along!
beverly52803 karen23320
Posted
karen, What autoimmune supplements are you taking?
pamela70431 karen23320
Posted
i had no idea there was such a thing as auto immune supplements !
sarb73328 Joannwilson
Posted
I was told by GP that the buzzing is 'cell activity' - the hateful LS at work, I guess.
Joannwilson beverly52803
Posted
i thought exactly that today. i just came from my biopsy results and told my husband that we do not even tell our mom stuff.
even in a public restroom we have closed stalls as opposed to mens line if urinals. & I know males talk about their privates and even compare and brag on their genitals & give them pet names. haha.
When you do find a Dr. who listens and gets it you can bet they have either experienced it themselves or a family or friend has led then to be more open to what it us like.
Joannwilson karen23320
Posted
yes I too have figured our the tight fitting clothing is bad. I also git shingles even though I got the vaccine.
That made me have to wear loose clothes to avoid irritating the rash and suddenly i noticed less discomfort in my crotch.
I wear only white all cotton briefs now and go without when i can. The elastic waist band and leg bands irritate too. I did find some panties that are non elastic. They were super expensive though and i only got 3 pair. I sew so I am ready to make some undergarments based on the old days bloomers!
beverly52803 Joannwilson
Posted
Joann, I also got shingles despite having the vaccine, but it was a mild case. Did you have the earlier one shot vaccine or the newer two shot one? I tried to get the new one, but all pharmacies were out of it in the fall. I will try again this spring. (I am in the US where doctors are no longer administering it. They want us to go to the pharmacy).
karen23320 beverly52803
Posted
YA'll need to read NANCY B's autoimmune protocol in this section, but here is what I CURRENTLY take:
Daily:
Vit D 5,000 iu
Vit K2 100mcg
Vit A 10,000 iu
Boron 3 mg
Selenium 200mcg
vitamin c 2000mg
Tumeric 450 mg
Monolaurin 600 mg ( prevents MONO, hv had 3x)
Zinc 50 mg
Glutamine 500 mg
Vitamin B12 1000 mcg
Apple cider tabs 600 mg
Omega-3 450 mg
Ashwangara Root ( sporadic) 2000 mg
Aloe vera juice 4 oz
Multi vitamin - Ultra formula
2 per day
Nighttime:
Magnesium 800mg
Calcium 1000 mg
and keep an eye on autoimmune stimulators like echinacea , will make LS SPEED UP! We need autoimmune suppresors.
HOPE THIS HELPS!
Joannwilson karen23320
Posted
yes i take all these and a few more. i also take cinnamon, biotin, milk thistle, caffeine, DHEA, Amini Acid
d Mannose,
I am always D deficient because I do not eat meat. so I am on 50, 000 Iu vitamin D Once a week and a daily regular strength.
I get my lipid panel and my vitamin levels checked every couple of months since i am
so often deficient in so many like potassium too. They let me know what I am deficient in. So many meds deplete a lot of essential nutrients.
i am nit a vegan or anything i just cannot eat meats because it makes me physically sick. I suspect that Alpha gal. I used to like beef but suddenly a few years ago meat just started causing me to immediately throw up after I ate it. First it was just beef bur then pork and then chicken too. I could still eat fish but I am burned out in fish right now.
beverly52803 karen23320
Posted
Thanks, I have read that, but according to her posts not even she sticks to that list. Isn't she anti steroid? Maybe I've got that wrong. There are too many posts to keep up with.
I compiled my list from the health hoax book, though he takes huge dosages. I have noticed no difference at all and it does get costly. I thought the boron might make a difference, but it doesn't. I'd rather take it internally than sit in borax (though people do drink it also).
For what it's worth I'm taking:
cal/mag complex
B 100 complex
D-3
Copper
DHEA
EFA
Zinc Gluconate
Boron
aged garlic w/ vit A, C & E
coenzyme Q 10
I eat almost no sugar, have cut way back on wine and gluten, have increased exercise and am back to doing qigong/tai chi.
If anything the buzzing feeling has increased.
I hope to find a FM practitioner with experience with AI disease and a better ability to make sense of studies done with supplements than any of us can.
Joannwilson beverly52803
Posted
Beverly I got the old one shot one. about 3 years ago and they just said sometimes it doesn't work. I got really bad shingles and i now have scars and nerve pain where the scars are. I had them all across my waistline,, my upper thighs, and my forearms. you could literally trace the nerve path the shingles were on.
They thought I had a biochemical reaction to anesthesia causing a rash until
they saw it following the nerves and how perfectly symmetrical the blisters were.
My 90 year old Aunt in another state got the one shot ine too and came down with shingles last year too. She had a mild casw though.
beverly52803 Joannwilson
Posted
Good grief! You have had a terrible time of all of this. You must have a very strong mind set. I'm terrible at being sick which is why I am trying so hard to get LS under control before it controls me.
Has your doc suggested you get the new vaccine?
karen23320 Joannwilson
Posted
JoANN- I kust ordered d- mannose because I am going Lectin free for 30 days to see if it helps ( no NIGHTSHADES: tomatoes- skin and seeds bad, canned ok, potatoes, eggplant, beans, peppers ( inc. cayenne, paprika, jalapenos), cashews, peanuts, brown grains including brown rice), and adding a PrE- biotic to encourage good flora growth. I hv been gaining weight and they do not know why? hardly eat any sugar, very little junk, 1500 calories and I've gained 70 lbs of belly fat??? wth?!
Joannwilson beverly52803
Posted
Karen I was too. After my gallbladder burst I then lost all my teeth. The stomach acids corroded them and I have dental implants now waiting to heal to get the actual teeth put screwed in permanently.
During this healing period I have been on a soft diet. And not lost any weight even with no sugar or meats.
You would think everything being pretty much fluid I would at least lost a pound or two but no not any.
I started the d mannose to bulk up my stool but its still isnt. I stopped all tomato products too because they are so acidy. When I get my teeth in I will probably make myself sick just to be chewing food again! I can hardly wait to eat some cashews and almonds! And crispy crunchy apples!!!
ro77360 karen23320
Posted
Very interesting, Karen. I, too. did the cotton makeup thingee down there to break up the pain from the chaffing.
May I ask what dietary changes did you make? Were they the ones for IC like huge amounts of water, no alcohol, sugar, tea or coffee, etc.
Thanks.
P.S. Also, the auto immune supplements.