Per mirror, my vulvar LS is spreading.
Posted , 10 users are following.
Looks silvery/white. Inner labia on the left side and over the clitoris. Same as last viewing (a month ago) but longer. Drat.
I thought I was getting better as I don't have the buzzing feeling anymore and I never had the itching.
I did Clob for 3 weeks every day, then I switched to olive oil for a few weeks, which didn't seem to have done much, went back on the Clob 3 x a week 2 weeks ago.
I don't wear undies anymore but I do wear fairly loose pants and even with them, that darn inner crotch seam is painful when I'm sitting down.
My next appointment at the urogyne is 7/5 I'd really like to reverse this situation before then as she wants to do a biopsy and I just don't want one - esp at my age of 75.
Can't we just monitor it, and assume its LS and try to control it??
Thanks for any advice.
0 likes, 69 replies
beverly52803 ro77360
Posted
That's what I was told also, but I was also told 20 years ago HRT in pill form was not only safe but actually brought heath protection in other areas like the heart. That certainly proved false. Also, my blood isn't being checked for estrogen levels. Seems doing so at least once a year it would be a good idea.
ro77360
Posted
Yes, it was with the oral HRT that women were told to take both estrogen and progesterone. I remember that now.
That's why I was surprised with that breast ache I got from the OTC estriol cream - must be stronger than I thought.
I am going to see my TCM MD in 2 weeks, I will ask him about the progesterone. He may be confused as to topical vs oral usage. Isn't the topical application more recent?
beverly52803 ro77360
Posted
ro, yes the topical is now the preferred method unless a woman has extreme problems. So it seems odd your doc thinks you need the progesterone. Definitely ask him. I'm getting the breast reaction also. Think I told you my gyn said it wasn't typical, but some women do report it.
Does your OTC cream contain natural ingredients that mimic estrogen or is it actually estrogen? The prescription cream I use has estrogen in it, but the yin oil has natural ingredients (at least I assume they are as I got it from the acupuncturist).
ro77360 beverly52803
Posted
Beverly, It has " 50 mg USP estriol per ounce."
Frankly, its very possible that he isn't aware of the new topical application vs the old oral dosage as he really doesn't practice western medicine anymore.
beverly52803 ro77360
Posted
Estriol is the milder hormone. (I managed to somehow loose the tube I had compounded so I never got to try it). I think your doctor should know these things or at least check on them. How old is he...could he be getting forgetful? Do you also see a gynecologist? Although I will be seeing the FM doctor soon I will definitely continue to see a gyn who is knowledgeable re LS and AV. Feel as though I can't afford to take any chances. At least if we gather as much info and opinions as possible we can decide how to proceed.
ro77360 beverly52803
Posted
He is my Traditional Chinese Medicine MD -I go to him for acupuncture and Chinese herbs.
Sometimes I ask him about western medicine stuff but its not his baliwick at all anymore.
Guest ro77360
Posted
Dear ro,
Some tell me biopsy is the only definitive diagnostic tool. But, I say, if the "treatment for LS is what you're using and it's not curing it, then why do a biopsy when you're already taking to prescribed treatment? Some say biopsies are not that painful. What pain meds have you tried? Lidocaine spray? EmuAid? A & D ointment? coconut oil? Chinese herbs?
There are several lichenified skin diseases. Some say they are caused by anxiety, overwork, conflict and depression (the latter is what you get from trying to cope with this disease and your "friends abandoning you. )
For my experience, the first dr I saw said "Oh this is LS, I've seen it a hundred times. It's incurable but minor take this clobetasol and don't come back." Did that 4 weeks, then whole area got red and sore. Went to new dr who said nothing but "Stop the clobetasol, use tacrolimus" One month later, Dr #3 said, "oh this is completely resolved." White had gone away but skin hurt. Sitting bending, you get the idea. I am 63 and very physically fit but live an overworked, stressed out, anxious life where family has died and friends have walked away. Asked Dr 3 what to do about skin and he said sit on ice (not at work) or use coconut oil. Neither one helped me. He advised to use estrogen cream. Also did not help. Dr #4 said "pelvic floor collapse" I said NOT. Prescribed invasive therapy which is not going to happen. Dr 5 last week ignored what I told her and is doing a "vag culture." I thought well why haven't any other drs done this but then she apologized for ignoring my original reason why I came there. DUH. So, I am just about losing my job because I can't sit and do my work and trying to figure out how to de-stress and begin a new attitude on life with this crap while so called friends laugh at me. Write back.
susan43705 Guest
Posted
Hi dr.n. I am sorry to hear what you are going through. I'm curious as to why you are losing friends over your LS. Unfortunately there is not one manageable treatment for all of us as this disease manifests itself differently for all of us. For me, at 73, it is a challenge every day. I have told several friends as we do talk about our issues at this stage in life, but I have not lost a friend. I do not talk about it except to say it is a challenge if someone asks how I am doing. LS has not prevented me from my daily activities. But there is always something going on down under and the attention I give it every day is always different. It is frustrating. I'm single and it has prevented me though from dating and I think I lost my last boyfriend because sex was becoming almost impossible. He had his own issues, but I guess his were okay and mine weren't. That does make me unhappy.
ro77360 Guest
Posted
Hi Dr. n,
I've cut way back on any products I used "down there."
I do use Bee Friendly vaginal moisturizer which I apply all over my vulva if it seems dry or has a burning sensation.
I insert a slightly larger than a pea shape blob of estriol right at the entrance of the vagina 3 x a week. Then I push it up a little bit -like an inch.
I have no pain, per se, regarding LS only a slight buzzing ache if I'm sitting with my legs crossed too tight or when I wore running tights.
No itching.
My urogyne PA (has been a urogyne oncology PA in the past) spotted what she said was LS in that there were some narrow white patches on the labia so she put me on Clob which I use 3 x a week, twice a day.
I looked with the mirror down there and it seemed that the one white patch was longer than before but I've observed that when I pull on the skin, to get a better look, the pressure of pulling the tissue creates a whitish area due to the tension in the pulling.
Guest susan43705
Posted
Hi Susan,
Thank you for your reply. One, I had one doc say in Jan it was LS but did no biopsy because she was "sure." The white is gone but I am in pain night and day and cannot sit, walk, bend or sleep. Ibuprofen does not work. Tried a dozen preparations and nothing has worked.
Friends do not want to hear about these type of problems. It is very embarrassing to talk about. One friend of 30 years said she was too busy and had more important things to do than to listen to such trivial things. Have not heard from her for 4 months. She's not a friend. Because I cannot sit to get me work done, I am out of a job in 2 months and will then have to move out of where I live. Also will lose health insurance which isn't that great anyway but it's something.
I'm glad you can do things and if boyfriend doesn't like you for you, then do you really want him anyway?
Sounds like you're doing well. I appreciate your challenges.
Guest ro77360
Posted
Ro, I understand what you're saying about pulling the skin and the change in appearance. My white areas are gone but the surrounding skin hurts night and day. Nothing I've tried helps. First dr said keep using clob but the other 4 said don't use it at all and ignored the skin pain. Dr 4 listened to my "skin pain" complaint and then said I need invasive therapy (rape by machine) and I totally rejected that idea. Some of these people are crazy. Would like to find a specialist but there are none here. Landlady expects me to do the house repairs and I work 50-60 hrs plus.
beverly52803 Guest
Posted
drn, have you tried sitting on a donut shaped pillow?
susan43705 Guest
Posted
Gee, dr. N, what awful, unsympathetic friends you have/had. I'm sorry to hear that.
It sounds like you have a very resistant LS to even get you to a mangement stage. Have you tried a sitz bath with baking soda or borax? LS is an auto immune disease. Have you had your thyroid checked? I would do that next if you haven't already.
I truly wish you well in finding some way to manage this dreadful condition.
Stay in touch. It's very comforting to share with everyone on this forum. we are not alone.
ro77360 Guest
Posted
What moisturizers have you used to alleviate your vulvar pain? I am having good luck with Bee Friendly vaginal moisturizer (Amazon.) Very gentle, creamy and effective.
Guest susan43705
Posted
Hi Susan,
Yes, those particular "friends" were not "friends" .
Have asked 6 docs to check for ANA/SED rate thyroid anti-bodies but they won't do it. What's up with that?
Four said I had no LS but earlier there were white patches which went away after 4 weeks on Clob. . Don't have a bath tub so would have to configure a place to "sitz."
As I am a PhD, I have access to thousands of medical journal articles and can read them. That's how I figured out some of my other problems, that and logical deduction.
How long have you been using the Clobetasol? Do you not have pain or soreness? Forgive me if I have forgotten. There's a lot of regular posters on here!
ro77360 Guest
Posted
Drn. I have a sitz bath - its just a little plastic tub that you put on your toilet (after you lift the lid that is) it sits on the toilet base.
I fill it half way with warm water from the tub and mix in some baking soda which is optional.
As b.s. is a salt maybe it wouldn't be advisable for very inflamed or irritated vulvar tissue.
Then I sit on the sitz bath and just splash the water around the affected area for about 5 minutes.
There is a more elaborate way to do it involving your hanging up a plastic drip bag of water but I skip that part and just use the splashing method.
Hope you feel better.
Guest ro77360
Posted
Dear ro,
have used something like the Bee product that was rec by the doc but it did not work....Have tried about a dozen things and am about insane. How are you today? Just hoping to keep my job. Do you still work?
susan43705 ro77360
Posted
I do that too with the sitz bath. It's very soothing.
susan43705 Guest
Posted
Hi dr. n. Wonder why the docs refused to test you for ANA/SED. Crazy. Find another doctor. I bought a $14 sitz bath on AMazon that sits on the toilet seat after it's lifted and I fill it with hot water and baking soda. it is very soothing. easier to do than I thought. You don't need the most expensive sitz bath. I got the cheap one and it is great.
I've been using the Clob for about 10 years or so on and off. No real pain but soreness and lesions once in a while. I try not to look every day because it is quite frightening. I switched gynecologists because she didn't think LS was an autoimmune disease and didn't believe in all the things I said I was doing and trying, including accupuncture and cannabis. So the next one I saw a few months ago suggested using the clobestol 3x a week for 3 months then go see her. That regime seems to be working with no real itching, but I still have issues. The first gyn did the biopsy because I was told by a clinic I went to before I got insurance that she thought I had cancer. The biopsy ruled out cancer. The biopsy didn't hurt at all. She was great and took her time to make sure I was sufficiently numb. I had a friend, who was an EMT person hold my hand through the procedure.
I"m sure stress aggravates LS, but how can one not be stressed with something like this. It's a constant awareness and needs attention all the ti me.
Guest susan43705
Posted
Susan Thank you for your response. Am glad your biopsy was not too painful. how long before you were up and around after the procedure? How bad was the after pain?
I am in enough pain now that my job is in jeopardy and all activity is rough. I tried CBD oil but it did not help. Are you smoking it or using the oil on the skin? My stress level is very high from work, loss of friends and living situation. Do you not have pain? I have no itch just pain. No infection either.
Thank you for responding. I am at the end of my rope.
beverly52803 Guest
Posted
drn, why not start a new discussion specifically targeting those who have experienced extreme pain as a symptom of LS ? Might be more apt to get some first hand recommendations. Possibly gabapentin would help; women have mentioned taking it for pain with other gynecological issues. I wish you success.
susan43705 Guest
Posted
Hi dr.n. I don't recall how I felt after biopsy except sore. The sitz bath helped.
I bought through the cannabis pharmacy coconut oil mixed with cannabis. I didn't feel it helped, neither does smoking. You might want to try cannabis for the stress or xanax. There must be something out there for your discomfort. Have you tried Aloe Vera? It's very soothing.
I don't have pain, just an occasional itch and feeling movement down under of things changing.
Guest susan43705
Posted
Susan,
You have itch and I have pain. Hhmn. Doc this morning said she did not think I had LS nor would it cause the pain I am experiencing in the vulvar skin. She suggested colonoscopy but that's another issue. Do not have not problems with colon that I know of. I
Have tried: CBD oil and coconut oil both topically and orally and saw no effect from either. Tried Pure Aloe, Cortizone 10 with Aloe, Prep H, Aquaphor, Vit A & D cream (some help), borage oil, Cetaphil, vaseline, burn gel with lidocaine, and a 1/10 oz $60 tiny packet of vulva cream from Amazon that did less than the $1 tube of A & D cream from the dollar store. Have north pole magnets which seem to soothe. Will get the sitz bath and try it . Thank you.