LS

Hi Tocagirl,

Not fun, is it? What your doctor told you about "all" her patients responding positively to steroid creams has a familiar ring to it. We hear the same thing over and over with surgeons telling the devastated woman in front of him, "I can't figure out what's wrong with you. All my patients are pleased with this surgery." HA!

Until we have a cure, the best thing to do is take very good care of yourself by eating well, going to bed early and managing your stress levels. I'm working very hard to understand what is needed and feel I'm making good progress, but can't make any concrete suggestions at this time.

Wishing you well,

Christine

P.S. Birth control pills are notorious for causing/worsening LS symptoms. They lower testosterone levels and testosterone is a big player in this disease.

Hi Tocagirl1

Hope it is OK with you that I moved this topic to the Pelvic Health Forum, where it is more relevant.

Cheers

Louise

Hello
I recently stumbled across this website after doing some on line research about LS. I'm not sure I even have it, but
I think I may. I have been having issues the last 3 years with a bartholin gland cyst. My Dr. has been lancing and draining it. Other than that, no other problems I knew of. Last week after the most recent lancing, he made comment about the color of my labia and vulvar area. Said he's never seen anything like it and had another Dr. come in to look. Now I'm worried because he hasn't seen anything like it either.

I had noticed for several months the color of my small labia and clitorus area has been lighter. Near white at the top 1/8" tips. I thought it was a sign of aging vagina, as I'm 48. I had a Pap done in Nov, and a nurse did the pap. She didn't comment on it and didn't seem concerned when I questioned her.

My Dr. mentioned Leuko Placia? Gave me Premarin cream to put just on the edges of my labia and clitoral area every night before bed and told me to come back in 6 weeks. If its still there he's going to do a biopsy.

I have looked closer and my skin is white between my large and samll labia up near the top only. In the deep folds the skin color is normal. The whiteness travels down on my perinium and stops just short of the anus.

I am not itching, burning and have no sores or torn areas. I have normal periods still, but they last 3-4 days only. I ovulate like clockwork and can mark the day my period os due on the calender. I was feeling like I was swinging through periopause like a breeze. Maybe not. If I have it, is there anything I can do to keep it from getting worse, and if it is, what should I do if the Dr wants to use HRT to treat?

Any insight would be thankful.

Well, Radar, these are the Great Questions we also want answers to! First of all, I think those of us who have an idea how extremely common your symptoms are might find your doctor’s reaction to the whiteness rather unbelievable! How could two gynecologists express such a thing when they not only learned old and new names for this condition in medical school, but MUST see it on a regular basis, given that (seemingly) most women finally end up with it! I just can’t imagine - not to be alarmist, but it occurred to me that they might be playing on your fears a bit. But that scenario hardly makes sense given such little motive to do so - unless they have stock in Premarin - lol.

All I know for sure at this point is that LS is an hormonal disorder. Its cause has become somewhat of a Holy Grail for me and I feel certain we will find, if not a cure, then viable ways to bring the body back to some semblance of neutral.

Dh and I went to see Judy Collins in concert last night and I guess I was a bit shocked at what a little, old, white-haired lady she has become - although she’s still fabulous! It occurred to me that we turn white all over eventually and given that we fall off a very high hormonal cliff at menopause - it’s not all that surprising that those areas supported by sex steroids are often the first to turn white. White streaks on the vulva are extremely common in this age group - but for some reason there is a boundary beyond which this natural occurrence is labeled LS. The nurse practitioner whom was present when I was first diagnosed said the white, streaky skin is very common in menopausal women. She wasn’t too thrilled about the red and purple bruising though, and called in the doctor who knew immediately what it was.

Kiki might want to join in here, as she’s an LS wisewoman at this point, but I have to caution you that the Premarin might really upset your system - and might even send you into more full-blown LS. Although this is a condition where estrogen is a big player, the solution is not as easy as a bit of topical cream. Some women find it very helpful, some very helpful for a short period of time, and some find it exacerbates their symptoms. From my perspective, the problem is not about replacing the estrogen that the body is trying to adjust to much lesser quantities of, but rather counteracting the oxidative stress that is actually causing LS symptoms.

Kiki has found neem oil helpful and we’re trying to determine if maca root is of much use. I’m experimenting with an herbal combination and will let you know if I discover anything worth sharing.

Wishing you well,

Christine

Christine,

Thank you for answering. My gut response is not to use the cream. Adding estrogen to my system doesn't seem like the right thing to do. I have uterine fibroid tumors and isn't that from an excess of estrogen? I know he's going to use mainstream treatment once he realizes what this is. Is leaving it medically untreated the way to go if I'm not experiencing discomfort? Looking at pictures on the internet has scared me to death. Every tingle and itch down there sends me running for a mirror. I'm afraid to have sex with my husband until I know what this is and then maybe I won't be able to.

In the mean time I'm keeping the area clean and lubricated and eating a good diet.

I had no idea such a thing existed or that so many women suffered form this. I certainly havn't reached anything near what some women have had to deal with, yourself included. I feel like I'm waiting for the shoe to drop.

Take care

Dar

Well, it’s my belief that we will find good paths through this hormonal rockslide - and that natural preparations will be our best allies. There is a discussion going on in the Food Forum about genetics and food tolerance. I think such response to plant substances will be similar for women with LS.

Yes, I think supporting the body with gentle, low-stress lifestyle is essential.

The further I go through this, the less remarkable the “disease” seems to me. All of this vulvar “architecture” we know as womanhood was built by hormonal interaction. The changes from a girl’s to a woman’s vulva are huge - what else would happen when the “juice” of the sex steroids is turned off than shrinking, thinning, etc.? The burning, itching and other symptoms are an extreme version of the same process.

To be female means to live life as an inflammatory process. We have never been taught such a thing, but it is the truth. Disintegration of the ovarian follicle each month so that an egg can be released and softening of the cervix during birth are both the result of inflammation processes. Yet, so are fibroids, LS, Alzheimer’s, and a myriad of other chronic diseases. Women hold living and dying very close and therefore perhaps have more talent for the cyclical nature of life than men.

I do think it’s time to see LS for what it is, without fear. The prevailing myth is this is a disease that we’re going to bombard from the outside with medicines and surgeries to bring women back to fully functioning sexual beings. Wildly unrealistic in my view.

I always use this to wash with whenever something starts itching/burning down below. I really think it helps. I also use just a little of the monistat powder on my underwear too. I know that the ingredients aren't all natural, but you could probably use just plain cornstarch as well.

Christine,

What do you think about LS being from an internal fungus issue along with hormonal imbalance? I've also read that many women are having sucess using EMU oil for relief along with MSM creams or supplements. Also about beta glucan supplements to boost the immune system.

I've been taking maca root powder for three weeks and am taking pharmanex nanopak vits/mineral supplemets. I mix the macca root with Swansons Super Green Max powder to make a tonic I drink first thing everyday. My biopsy is scheduled for this week but I'm pretty sure what the results will be.
My symptoms do not seem to be getting worse, but I'm still white down there. I've had my antioxidant levels checked. They are high. I tested for acid/alkalinity, and I'm alkaline. I'm trying everything I can to work on this from the inside out. I've even had one of three hydro colon cleansing sessions to see if that gives results. I'll let you know. If it's an auto immune system issue, wouldn't I get colds and be sick alot. I feel great and I'm never sick. I'm not having major perio menopausal issues, i.e. hot flashes, mood swings etc... I have very on time periods that last 2 days and some breast tenderness and a white vaginal area with occasional mild itching and pain during sex.
One LS sufferer I read about used a mixture of colloidal silver, tea tree oil, emu oil and DMSO. SHe had very good results. You mentioned that you were going to try maca root. Any luck?

Dar

Hi Dar,

From my perspective LS/BXO have nothing to do with diet, fungus or autoimmunity. If we are talking about the same disease process (which is always open to question) then I believe these symptoms are caused by the pro-inflammatory and pro-oxidative cytokines and leukotrienes formed during the enzymatic action of luteinizing hormone. Maca aggravated my symptoms over the long run (I believe Kiki had the same experience) and I have to wonder if it doesn’t actually increase LH.

I will be posting a notice in a few days for 24 people (12 men and 12 women) who will be willing to partake in testing a new soothing salve. I cannot market it as medicine, but feel quite certain we have found the enzyme inhibitor. Sign-up for the program will be located in the Whole Woman Store.

Christine

Christine,

I've noticed changes, but can't tell if it's from the maca root. I have a sore spot and itching/burning on my clitorus that has just recently started. I've been using the maca root for almost a month now. I'll back off the maca root and see if it abates any. Thank you for sharing your results. I'll look for the posting to test the salve.

Dar

Christine,

I've been officially diagnosed with LS. Lucky me. Of course I was prescribed the Clebatisol and told to use it for 2 weeks, 2x per day. I asked to have my hormones tested, specifically my LH. I was on day 28 of my cycle when my blood was drawn. The results show that my FSH, LH and Progesterone are all normal. My LH number was 5.5. At that stage of the cycle the range is normal at .5 to 16.9. For some reason there was not an estrogen reading. FSH read 5.0. Normal is between 1.5 to 9.1. Progesterone read 14.7. Normal between 3.3 to 25.6. My periods are normal and like clock work, so I must have enough estrogen. I'm not sure what this means as far as my LS goes. Didn't know if the results would be helpful or not. I'm not having pain or itching, some inflamtion and whiteness. Still waiting for the shoe to drop.
I registered for the trial. Hope it has good results for everyone concerned. Thanks for your info.

Dar