HI All- Diagnosed JUNE 6, finally saw VULVULAR specialist here in USA- TEXAS. First let me say she is wonderful! very knowledgeable, calm, good listener, explained everything in detail. She believes it was always there, waiting to rear its ugly head and my bout with the flu, constant coughing, peeing on myself, destroyed the integrity of my skin and allowed the LS TO REAR its ugly head. SAID it can be a virus, trauma to the area ( sexual abuse or rough sex), an injury to the area from riding a bike or other injury that gives the LS or other autoimmune disease a chance to surface. GOOD news: She said the autoimmune protocol I am following with regard to SUPPLEMENTS, ( thx NANCY B), diet ( limiting wheat and sugar) is right on point. She also added that I do not need to be as militant about the low oxalates as I have been as she believes I have a genetic pre- disposition for kidney stones ( FAMILY history with MOM, DAD and 3/6 siblings having them). Not to go crazy on oxalates, but can add back in a moderate amount of my favorites like spinach, sweet potatoes, and multigrain bread/ nuts- Once a week is fine. The BAD NEWS- I am not in remission, I am asymptomatic- I hv no symptoms of pain or itch, can wear pants, feel fine, can enjoy sex, but I DO HAVE ACTIVE DISEASE!☹☹☹ She wants me to continue CLOB 2x a day until I see her again in 6 weeks! She said due to my age (47), the fact that I still hv my period every 28 days and have plenty of hormones, the disease will continue to progress without the CLOB. She wants me to rub my testosterone cream right on my clitoral area, also rub CLOB on it two times a day and lubricate entire vulva with EMUAID OR VMAGIC everyday. Otherwise she said clitoris may completely fuse over and I may hv no sensation there at all☹. I hv been so happy with no symptoms and ability to get on with my daily life, that this was a real bummer to me. I will do as she asks and follow her instructions. I will also persue allergy testing for gluten/ dairy sensitivities, and other possible food triggers. I had her run more thyroid tests and re- check testosterone levels before I see her again to see how much it is penetrating the dermis ( to help libido). Glad I saw her, glad to be going back in 6 weeks and glad it is covered by insurance! Gotta keep on doing my best to handle this and find out where the weak link is in my immune system.
Hi Karen, I'm so glad you got some answers and a course of treatment and affirmation. Good luck to you.
I am happy for you too Karen; how great to have such a well informed specialist....Wish I could find one in UK! All the best,
Julie
Hi Karen,
I am glad that you have found someone that listens and you feel happy with.
Her comment regarding LS as always 'being there' is something I have long thought might apply to many women with LS.
I have some questions for you..
"The BAD NEWS- I am not in remission, I am asymptomatic- I hv no symptoms of pain or itch, can wear pants, feel fine, can enjoy sex, but I DO HAVE ACTIVE DISEASE!"
This I found interesting because really it depends on what you define as remission. My definition of remission is her definition, but it sounds like you maybe thought No symptoms No LS! maybe other women think that way too.
"She wants me to continue CLOB 2x a day until I see her again in 6 weeks! She said due to my age (47), the fact that I still hv my period every 28 days and have plenty of hormones, the disease will continue to progress without the CLOB."
I wonder why she wants you to continue using the Clob 2 x days for six weeks...thats intense..just curious as you have no outward symptoms..unless I'm missing something. Also is she saying that you will need to continue using the Clob to stop the progression of the disease long term? So, is she saying you will need to use it every day? every other day ? how many times a week? are you happy to do that?
"She wants me to rub my testosterone cream right on my clitoral area, also rub CLOB on it two times a day and lubricate entire vulva with EMUAID OR VMAGIC everyday. Otherwise she said clitoris may completely fuse over and I may hv no sensation there at all☹."
She might be right about putting Clob regularly on ones clitoris as many women report fusing in that area and I suspect it is harder to unfuse that area than anywhere else...once its gone its gone.
hey nancy that is great, it gives you a sign of relief, thats how i felt, but my Dr. didnt tell me if my was on remission or not, i wish my insurance would cover this Dr. i am happy for you and i do use clob 2 x a wk not 2x a day but i guess it depends on drs. i am just getting better on this diverticulis and i am afraid to take my vitamins since i have been on liquids and i hope my ls wont flare up.. janie
karen, glad that she has given you peace of mind! The gyn that I've seen is also very calm and approachable. It makes a difference. (Just wish her staff were a bit more organized.)
I go for another follow up tomorrow morning if anyone has any unanswered questions! I am making a list.
Am curious how it is that you are using a testosterone cream. Don't remember reading about anyone using that, and you say you have "plenty of hormones". I am using estrogen cream for atrophy. Gyn said my LS was due to low estrogen (as demonstrated by AV, I guess). Did she ever explain why she prescribed it...or did another doc?
I had my annual blood panel with GP, but don't know if he checks for hormones (just remembered I didn't get a printout). Gyns tested for them at menopause. I did think to ask for extra thyroid and more accurate sugars which he said were fine.
Did she mention what kind of virus would cause LS? Personally I have had no trauma. Wonder if measles could be involved. Had that as an adult. Thought I would die!
Glad you can eat the oxalates. I remember you listing all the foods you couldn't eat and knew I would have a real hard time sticking to that. I can't do dairy and that is enough of a restriction. Is there any theory as to what brings on a return of symptoms?
i have a good specialist at only big hospital in Cornwall. I wont put name in case it wont let me post this . she is brilliant and knows so much about LS .
HI Guppy- I thought because I was asymptomatic- no pain, no itch, that it was " in remission",but apparently when she examined me she said there were still areas of active disease. The outside looks good- all pink and plump, labia majora ( part of hair) looks good, but when she parted labia minora she still saw whitish areas that she wants completely gone, also a little part on my perineum. She mentioned that she saw no anal involvement at this time and any itch or discomfort there was due to hemmerhoids- probably from dietary changes and not enough fiber. But not LS. She said to use CLOB 2x a day until I see her again in 6 weeks, she wants ALL white areas gone by then. Then we will talk about a maintainence regimen. At my age (47) and not in menopause, she is not worried about skin thinning out. She said if I were 70 and had no Estrogen left then thinning skin would be a concern., but not now. She gave me a packet of the most up to date research, treatments, comparisons- very informative- 15 pages,! wish I could share it all with you guys. I will rub the testosterone cream and the steroid on my clitoral area as I LOSE more sensitivity there everyday☹ That's the saddest part to me....
She said any kind of virus can lead LS - hat is already hidden in the body- to bloom. I have had mono several times and pneumonia multiple times, so she said it could hv manifested anytime. In my case probably the flu last JANUARY.
I was prescribed testosterone cream by a different OB as a result of my blood tests showing plenty of estrogen, but 2.7 Testosterone ( normal range is 10-60 depending on age). I had no libido, no energy and was gaining weight even though I WAS AFRAID to eat anything!
I am a singer ( High Soprano) and hv to be careful not to change my voice - so no BIOTENE.
Specialist has checked my levels again and I will hv results in 6 weeks at next appt.
Karen, I'm glad you found a good doctor and it sounds like she knows what shes doing.
Yep, I've lost some sensitivity in the clitoral area, it must just be something that happens with LS because it doesnt look like it has fused over or anything...it is a worry.
karen Saw my gyn today as well, and received a similar report re small remaining areas of LS. Any plumpness for me is a result of estradiol (for AV), but the clearing of LS is due to Triamcinolone (weaker than what you use) now applied only twice a week. I AM the 70 year old your doc was referring to ;-) I would LOVE to read those handouts you were given. Might your doc have printed them up to hand out or are these pamphlets? If it's the former the sites may be printed on the top of the pages. If so, could you post those (assuming it doesn't get blocked) or PM all who are interested? Thanks.
Guppy, I mentioned to my gyn today that I felt a little tightness and tingle around my clitoral area, but she said there was no sign of anything. Probably just dryness, but I don't notice the coconut oil changing it much. It could be before using the hormone cream and the steroid cream the whole area may have felt like that and I was used to it. Thought she would suggest using some of the steroid there, but she said just where the remaining bits of LS are which seems to be edges of labia and perineum. I can't "see" any of it myself really. Just go by feel. Could it be loss of sensitivity comes with age?
Hi Beverly, I too have been feeling tingling around my clitoral area. It freaks me out this damn disease is now eating up this part of my body. I look at myself every morning and it is always different. I feel like I am trying everything under the sun to manage LS, but it has a mind of its own.
susan, have you mentioned it to your doc? Were you advised the same as I was not to use the steroid on the area? The estradiol cream (for the AV) has improved the whole vulva so I don't understand this new twinge. I will try coconut oil for a week to see if it goes away. Are you doing anything in particular? I noticed it about 5 days ago.
Have not mentioned tingling to my gyn. She did not advise me on whether I should use the Clob on clit. She prescribed estradiol which I bought and used a couple of times, but have decided not to use it because of side effects. She really had no information for me regarding LS and doesn't believe it is autoimmune at all. I have found more information on this forum than anywhere else.
Hi Beverely,
Well, Karen and I aren't in our 70's so it cant be just loss of sensitivity with age. Sometime you have to accept that some of the symptoms you have are from LS and nothing else.
If you are feeling a strange sensation in the clitoral area then it is likely LS and I would use the Clob. You have to remember that the doctors arent God and dont know everything. I learnt this a long time ago.
I hope you feel better soon.
Hi Susan, usually when you start to feel tingling/itching/soreness in the clitoral area it is wise to use a bit of clob cream, twice a day for a couple of days or so because if not it just gets worse in my experience. I'm one of those that always have problems in that area if I flare and I have found the steroid cream to be a godsend, cos nothing else does the job quite so quickly.
Susan, unfortunately your doc doesn't sound very informative. What is her theory re LS if not autoimmune? Do you go with a list of questions? My gyn drew a diagram of where to apply the steroid (different one from what you are using) when I was first diagnosed and is very approachable re questions. Just went for 3rd visit yesterday. I can't help but think the tingling may be a precursor of where the LS is about to appear. Any sensations I may have had before I assumed were due to atrophy. Now I am focusing on anything at all unusual. Assume you have atrophy if she prescribed estradiol. (Sorry, I have a hard time remembering everyone's details). Are you afraid of experiencing side effects from it or did you actually notice some? From what I can tell it has totally reversed my atrophy w/o any side effects. I use a tiny amount at the vag entrance.
Hi Beverly, YOu have encouraged me to try Estradiol again. My reservatiaons are because the clob can thin the skin and cancer could be lurking, so that on top of possibility of cancer with Estradiol, just is too much to handle. I do see gyn with questions, but she has no answers except LS is quite common in her practice.I know that tingling is a precursor of where it is going next and at least it is a clue of where the clob has to go.Really can't take the unpredictability and daily changes every day. I don't understand why there isn't a lot of research on this.
I'm wondering if Asian women have this issue. I gather there are women here from the United States, Ireland and England.
Clob does work, but it can thin the skin so I mix it with Emuaid when I use it.