Hi all, its me again. I was wondering if LS only affects the outside? I am having tears at the 6 o clock area, itching on the outside and it extends to my anal area, dryness, but i’m also having extreme burning coming from within my vagina. I used a Q tip to feel around in the vestibule area and it was the worst pain i ever felt. Only thing i could see is slight redness in some areas. that’s it. so i’m confused why it was so painful. Can LS cause burning within the vagina? thank you
Hi Nicole, sorry to hear you are suffering its a nasty condition.
Yes I also have the same , mine actually began in the anus area and it seems when i get relief higher up it goes back there again. Obviously made worse by going to the toilet.
I douche in Lavender and bicarb after using the toilet and spray with the same after passing urine.
The burning i get seems to be if i have eaten something that LS hates ( most recently eat half a bag of cola bottles ) Terrible reaction next day sadly same sore red inside vagina and swollen labia.
It does subside if you stick to your routines.
I have to moisturize with Vaseline or vitamin e then use Betnovate Ointment.
A lot of the time with me it is something I have eaten or had to wear leggings for work and have become hot.
I sit with an ice pack which i find helps immensely with itch and swellings.
Hope you get some relief soon xxx
Hi nicole, I'm also one of those with a super sensitivity to foods which immediately affect my vagina. Yes, I know it sounds crazy but its true. If I eat half a bar of chocolate within the next couple of hours I will start to feel a very clear twitching/itching down below. There are other foods as well. If I drink more than one glass of wine, the same thing happens. If I eat junk, like a soda, the same thing happens. I will admit to being super senstiive but I believe most of us are but at different levels. This horrible disease changes the way you think about food. Any doctors will tell you that this is rubbish, but they know nada.
The key is to figure out what your triggers might be. I think everyone should try to cut back on dairy and sugar, but sometimes gluten has to be looked at too.
If you google Vulvodynia and oxalate foods you will see that there is a correlation between the two, and so it is not too much of a stretch to believe that women with Lichen Sclerous will react to certain foods via their vaginas.
The burning pain that you describe inside the Vagina is something I have not experienced because the list of symptoms for LS is long and depressing. I have had the tears you describe and everything else really, and I know that when that happens it means I am flaring, or even having a mini flare. If you are experiencing itching/cuts/soreness/pain inside your Vjay then you are flaring and need to take action immediately. As I said its about what you are eating or drinking.
If you were locked in a cell for a week and given water and gruel your LS would clear up, I am certain of it. Obviously, that's not gonna happen and so you need to take a long hard look at what you are drinking and eating.
Sorry, what does "half a bag of cola bottles" mean? Is this something to do with soda and therefore high sugar?
It is possible to cut your sugar consumption a lot just by cutting back a little at a time if you find cold turkey too difficult. Eventually it will become so noticeable to you will want to eat very little of it, like one cookie. I did this many years ago. I do drink some juices, eat fruit & keep a small jar of sugar which will last me a year or longer. Use it only for coffee and sparingly. Can't say it has made any noticeable changes in my health or body. Avoiding it didn't keep me from getting LS, though I seem to have a mild case. I just didn't want to eat something with no nutritional value that everyone seems to agree is bad for you. My one exception is dark chocolate though.
In your case if you know it creates havoc would something like stevia also bother you?
Curious if you have AV as well? My gyn said my LS was caused by lack of estrogen. Have seen your name before but can't keep straight who is who.
Hi Nicole,
The inside of mine burns only during intercourse. My dr told me LS does not affect the inside of the vagina and the burning could be premenopausal symptoms. I’m not sure I believe this. I have it all along my anal too and am very red. I even have a red stripe going up my tail bone. Not sure if this is related. Hopefully one day they’ll figure it out and find the real cause.
Hi Milbit, I am the same and red raw from my anus , it also has extended out to the creases inbetween my legs and top of thighs. I was actually thinking it wax the heat. And use zinc baby cream as a barrier.
The indide of my labiel lips becomes red and swollen also after sex.
I wash immediately with derma and my solution afterwards .
Also I put my barrier and steroid cream on. Sadly that is how I havd managed . Altjough truth be known I would gladly give up sex as my labido has gone . I was given testosterone gel but it did not work at all sadly. How about you ?
Hi Beverley, Cola bottles are jelly sweets anc I was having a stressful day .
If i dare to overindulge it creates a problem with my LS.
I havd cut sugar out and dairy and had the same reation when i tried a piece of cheese at a food fare.
Sorry Av ? I have exzema and asthma all my adult life.
Very sensitive skin and lots of allergies .
susan,
AV is atrophic vaginitis. (Assume you are not past menopause).
I wonder how women with LS fare when menopause hits. Too little estrogen causes women to develop menopausal issues, some more than others. That's why they used to be given hormone replacement therapy in pill form. That caused breast cancer in many women so now they feel using it topically is safer.
I was diagnosed with AV at 67 and was prescribed hormone cream which I did not use because of family breast cancer. Now at 70 am told by a gyn I have LS due to lack of estrogen.
I also have sensitive skin, rashes as a child, extreme reactions to insect bites, allergic to wool, etc, but never diagnosed with anything in particular. Definitely react to mold and now have allergy symptoms in the spring & summer. Dust seems to bother me also. Have never bothered to get tested as it seems obvious.
Although doctors say that lack of estrogen can cause LS I'm not sure they know why. Only that it is seen to occur in particular in women after menopause.
I am now using hormone cream (estradiol) for the AV, but I don't believe it has an effect on the LS. For that I was given a medium strength steroid.
I went to a gyn because of on & off again symptoms of a vaginal infection. That's when I learned of the LS. I really wasn't very uncomfortable. The steroid seems to have taken care of it, but after reading posts of other women I have no idea of what the future may bring. In the meantime the fleeting infection persists. I took flagyl, the symptoms disappeared, but now are back though milder.
I read these posts to see if I can make sense re what is going on with my body compared to what others are experiencing . But I'm beginning to think there are two different categories of LS according to age. I may be wrong. Guess I should try starting a new topic and see what the responses are.
Susan, Those sweets contain gelatin and sulfites and food colour which is probably why you have problems with them. I can't eat chocolate,really. I sometimes ignore that fact to my peril and then feel really ill. I have narcolepsy which means if I eat anything that is high histamine I literally pass out.
Yes my lab Iibido is gone as well. Thinking of trying something.
Hi Guppy , yes chocolate is my enemy now too sadly.
How awful for you hos on eatth have you managed with your narcolepsy as well ?
We do have to indulge now and again , despite the suffering it is what keeps us feeling normal to be naughty 🤗
Hi Beverly, I was diagnosed April this year. But like so many feel I have possibly had it for years.
I had an emergency hysterectomy at 30 but they left my ovaries.
I am now 57 and November last year felt a wreck and was given oestrogen tablets low dose.
Nothing showed on my blood tests to confirm as i had been having bloods done since age 46.
I improoved but have since slowed down on the tablets due to high risk of breast cancer.
I tried St Johns wort and had an allergic reation to that .
So taking one tablet a week of oestrogen and I feel fine 🙏
Although still struggling to get my LS under control.
I take vitamins A, B, C , D , zinc and magnesuim. Honey with propolis and drink Ginger everyday.
No dairy, no sugar ( hardly ) no alcohol and have never been able to eat provessed food.
For me stress has been a major factor.
As we are all realising LS is infidual .x
Hi Susan,
So you were given estrogen pills based upon you're feeling a wreck, but not on blood tests indicating that your level was low? Yet you felt better having taken them. That's interesting. Maybe your levels fluctuate and were higher when tested? Or maybe the blood tests aren't very accurate.
Did you experience painful gyn exams or painful intercourse at any point? That's how those of us with AV know we have it.
Apparently it took over 25 years after your hysterectomy for LS to appear. Did your doctor say anything about it possibly being caused by a lack of estrogen? Was it a gyn who diagnosed you?
Has your diet and vit regimen been just since this spring? Did you arrive at it through trial and error or reading?
Sorry for all the questions, but I'm really trying to make some sense of LS and what, if anything, I should do about it other than using the milder steroid. I didn't have a sudden flare that so many women describe. It seemed to come on gradually like the AV did. As I've mentioned I didn't even know I had a problem. Just assumed the AV was gradually progressing. It was the intermittent signs of BV that brought me to the gyn. I saw no point on yearly visits once the internal exams became too painful.
I don't think I've read any posts from women who are experiencing the onset of LS the way I have. Maybe it will get worse in the future, I have no idea. Am hoping to determine that by reading what different women post re their individual circumstances.
Thanks.
B.
Sorry, one more question. Why do you think you had LS for years? Were you experiencing symptoms but not mentioning it to the doc or did the doc not recognize the symptoms?
Hi Susan, I take DAO enzymes before eating most of the time. But, they are very expensive and if I want a glass of wine I have to take three!! It sucks being like this but what can you do! you just have to get on with it.
HI Beverley , yes i was given the tablets and sent for a blood test. Follow up appointment four weeks later , it was discussed that again my blood results where inconvlusive as were testosterone levels . But i felt so much better in myself , more energy and aches gone along with feeling depressed . No pain during intercourse at all only lack of Libido . Yes i was then reffered to a gynae as shortly after developed LS symptoms . No he did not connect LS to low oestrogen levels . He actually had LS himself . Yes Vitamin regime trial and error and by reading how others where managing on this site . Great advice especially Guppy and Nancy. Although not everything has been a success for me and I am very aware of how indivdual LS is to each and every one of us . Not a problem glad to tell you and we all get some benifit to read how we all manage . Diet has played a major part for me and stress . The Diet I am managing the stress not so well . It's a nasty thing and so sad that the lack of medical proffesionals who can help . so you say that you do not have flare ups ? What symptoms do you have ?
Susan, It's difficult for me to tell where the atrophy left off the LS began. It never occurred to me to look with a mirror and bright light as nothing felt all that different. Have not been attempting sex for years. Knew that the atrophy would be a problem and no irresistible men on my horizon. As I mentioned I have this fleeting infection. Don't see how you can have symptoms and not have one (of some kind). Was not able to see a gyn till this spring when I got back to where my HMO is accepted. That's when the gyn told me I had LS which in my case "was caused by too little estrogen". I was having some discomfort with BMs, but nothing that lead me to think something was wrong. Also irritation at the perineum. A bit of the latter irritation remains. So the problem I had gone to the gyn's with at the start, the phantom infection has not gone. Flagyl took care of it, but it has returned. Nothing terribly bad, but irritating and I want it gone. Re flare ups I've had none, which makes me wonder if their are different versions of LS. Have you noticed that the vitamins have improved anything?
HI , I am not really sure as early days as I moved to SPAIN and so have had to send for Vitamins on line as cannot get them all here and very exspensive. So only on full regime now . Changing my diet definatly has as instant problems if i do not stick to it . But I am super sensitive to foods and always have been . As they damaged my bowel and stomach 25 years ago during my Op . xx
Hi beverely,
You mention 'the phantom infection has not gone' what if that is in fact LS symptoms?
What are your symptoms, because maybe some of us might have had the same in the past.
Guppy,
Symptom: a slight internal (only) vaginal itch. Nothing major. Would come & go. At first I thought it may be a yeast infection, but there was no discharge. Eventually an odor sometimes developed, so I then assumed it was BV. As I had to wait 6 months before seeing a doctor I sent away for a gel that was mentioned in posts that women recommended (multi-gyn actigel). It seemed harmless enough as it is supposed to bring PH to a healthy range. It burned terribly which really confused me. Tried it a 2nd time and it actually caused a discharge. When I finally saw the gyn I brought it with me. She said she would it expect it to burn thinning skin as it was too harsh. Another surprise. I'm not sure who benefits from that gel. Younger women, I guess. With the LS diagnosis (on top of the AV which I knew I had) I was prescribed hormone cream (AV) and mid strength steroid (LS). When I asked about the itch (which is the reason I went) she said "sometimes what is happening outside makes you feel it's happening inside". I have absolutely no outer itch and the prescribed creams have done absolutely nothing for the internal one. I finally got the flagyl I had requested and the itch immediately stopped (1st pill). After a couple of weeks it returned. Gyn now suspects fluctuations in estrogen levels affecting PH levels causing a fleeting infection, so using estradiol nightly with yeast cream. I think the itch comes less frequently, but is not gone. Long before and at menopause I sometimes had a mysterious infection that responded to flagyl only, so I assumed it would work this time. The difference is the earlier rendition came with a discharge that felt like battery acid. This does not; no discharge. I am trying to be patient, but if this continues I will try another round of flagyl soon. From what I can tell the other issues have been resolved. My LS symptoms were mild enough that I didn't know anything was wrong and the estradiol has made major changes re the AV. I see the doc in 2 weeks. Assuming she will tell me to stop the twice a week steroid. So there you have it!