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.
it is better to find out so you can start treating it before it gets worse. Be glad the PA is taking it seriously. I have been told that due to my age and I am only 63, that not to worry about "female problems" as if they think I have a foot in the grave already. I am in the US and this is a pretty routine attitude. But I am still actively raising teenage grandchildren, and my family live past 95, so I feel like if I run true to my genes, I have 30 years left. it makes me mad they think 63 is so old! That old saying about an ounce of prevention being better than a pound of cure is very true in this condition. I have seen people here talk about hiw this has affected them so badly. There is a lot if good advice here too. No matter what age you are, you deserve top notch medical care fir your own self. Wishing you the best.
why does she want to do a biopsy then? would say no thanks and ask for some steroid cream. if it clears it up then there's no need for a biopsy. why inflict pain and suffering? My LS lives quietly as a white line on the inside of my labia minora. It only itches when I have a flare up.
plus I've never had a biopsy done, diagnosed through visual examination. As theres no cure you can either treat it with steroids or not.
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.
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.
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.
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.
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.
Joann, what are the symptoms that are so bad?
I'm already pretty miserable with atrophic vaginitis and its many urinary problems - urge/frequency, spasms, sleepless nights, etc.
Thanks for any advice.
Dee, she put me on Clobesterol but it burned/ached down there so she took me off. Nothing right now. If the LS causes urge/frequency maybe that's what's bothering me and not the atrophic vaginitis?
Christine, what was your treatment? Thanks.
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.
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...
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.
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.
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.
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
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???
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. https://www.healthed.com.au/video/lichen-sclerosis-gps-need-know/