Is there ANY one else out there who has LS in the way that I do? I've taken part on several threads but have really ended up feeling more alone than ever. I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.
Chrissy those are symptoms, and the same ones I've had. Dr. Goldstein says women who still have female hormones mostly don't experience itching and burning. When our clitoris disappears it's because the inner lips fuse together over it, hiding it. He also mentions what happened to me in the final stage of that process: a big abscess between the clitoris and the new covering scar. You ARE suffering, as you'll be very gratified to hear Dr. G. say over and over. It sucks to lose the sensitivity there. He shows a pretty simple surgery to expose the clitoris again, but only he and three other surgeons in the US perform it. He said it's no longer true that surgery just re-scars. His 1200 LS patients are on such a thorough treatment program he's confident the steroid ointment will prevent re-scarring.
His big aha for me is we should soak in warm water 20 minutes (yaayyy! baths again!) and rub in the ointment for 90 seconds to make sure it penetrates deeply. We should stop worrying about thinning the skin being a side effect. It's actually part of the 'treatment strategy', because LS by its nature produces very thick skin with very few live skin cells in it and way in the 'basement layer' are all the inflammatory cells we need the meds to reach. So, 1. soften by soaking, 2. rub, rub. rub. This should improve the effectiveness of the treatment a lot. I'm very optimistic myself. He also says that the ointment penetrates better than the cream, so I'm putting aside a new tube of generic Colbetasol cream and getting a new tube of Dermovate (brand name) ointment.
Alan, our moderator has said we can post this link to the thread that has a link to the presentation video.
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
Morrell I swear to you I have no fusion of inner lips (well I haven't got any I'm just completely flat there) OR of the clitoral hood over my clitoris. It is still completely exposed, just getting smaller. My consultant confirms this and says some people ARE non symptomatic. As it happens at the moment I can still orgasm but I have NO idea what to expect in the future, whether it will just go like my lips. I have always used ointment not cream as she said right from the start that cream was no good. I have not had a period in nearly 3 years so I'm not sure where that leaves me in terms of remaining hormones but young women with masses of hormones itch badly
Hi, are you premenopausal? Not everyone gets itching. The first thing to go was my inner labia. No losss of clitoris, I was diagnosed early and have been using Clob for ten years.
I know what your saying, like me, my inner labia just went flat instead of fusing together. But I can see the scarring where they were. It looks like they just fused into the vulva.
Hello ChrissyC
First of all big hugs to you. I felt like a freak when I was first diagnosed (my symptoms aren't the same as yours). I am 70 and single (by choice) and it's many years since I have wanted penetrative sex, so the changes in vulval architecture haven't bothered me. Quite by chance I was chatting with my 34 year old music teacher and it transpires that she has the same as you. This is also true for one of my close friends (aged 50) - all white, loss of architecture and no other symptoms. Once I got over feeling a freak I have chatted openly about having LS - it is just a skin condition which happens to have occurred in a private place. With some people I have to keep repeating that it is not a disease and it is not contagious or infectious. I guess that people with very visible psoriasis must experience the same reactions that I have sometimes had.
I was having biopsies earlier today (ouch!) and was talking to the doctor about fasting. She told me that the man who invented the 5:2 diet had auto-immune conditions which disappeared when he went on the diet. There's now some proper research (UCLA I think it is) about 3-4 day fasting and reduction in autoimmune disorders. So I am going to try that as of tomorrow.
Once again - you're not a freak, what about trying the fasting to see if it slows down the progression of your symptoms?
It sounds like you have both LS and post-menopausal atrophy.
I Googled Post-menopausal clitoral atrophy and found a good page:
Estrogens and androgens are required for genital tissue structure and function. These hormones act on estrogen and androgen receptors, respectively, which exist in high numbers in genital tissues, including the epithelial/endothelial cells and smooth muscle cells of the vagina, vulva, vestibule, labia, and urethra. Diminished estrogen production renders women’s genital tissues highly susceptible to atrophy (thin, fragile structure).
Physical examination of the postmenopausal woman’s genitalia shows clitoral atrophy, phimosis (when the clitoral hood does not retract limiting exposure to the glans of the clitoris), and nearly absent labia minora. The appearance of a woman’s labia minora mirrors her level of estrogen (estradiol), because these labia are exquisitely sensitive to estrogen (estradiol).
Hello everyone,
Ive had labial adhesions parted twice by my Gynaecologist at the RVI in Newcastle upon Tyne. My clitoris was completely exposed again which was wonderful, unfortunately the skin has fused back together again now but I have the option of surgery again when I want it. She offered to do it by epidural the second time so I did not have to go through general anaesthetic, apparently it was basically just splitting the fused skin apart to expose the clitoris again. Very interesting to hear about the skin being thicker due to LS. I unfortunately do have the itching now and again and have also noticed when I do get a flare up it goes right up between the cheeks of my bum also. I have just started the menopause but have had LS for about 20 years now.
Does anyone else have problems with the skin at the entrance to the vagina being very tender and prone to splitting during intercourse?
Yes I to have occasional splitting at the vaginal entrance. Watching Dr Goldsteins lecture, he said its very important to keep applying clobetasol to the area after surgery to keep it from fusing again.
I'm well into the menopause, nearly 3 years without a period, still having major hot flushes. I've used the ointment properly since being diagnosed, about 4 years now. It didn't stop my labia going, going, gone and it isn't stopping this either. Thanks for replying Sha
Hi--I would love to get a follow-up on the fasting! That's supposed to sort of be a reset button for positive changes in the body (and likely something we would have encountered through the millenia). I'm also reading that lowering insulin levels with a low carb diet can achieve some similar changes as fasting. Let us know how you do!
I wouldn't really say I look scarred either. They just aren't there any more. It's quite bizzare really.
Yes, I was told to use Clobestol but as with others I was wary about skin thinning so probably didn't use enough. I will know better next time in light of this recent info.
Best wishes.
It does sound like your architecture loss may be due to menopause and you may have LS as well which would explain white skin. did you have a biopsy done, sorry not sure if you already said.
Yes I just want to cry when I think Ive been misguided in treatment. I know thats the fear with many women so they want to use it less then they should. I just read on a sight that a good well informed dr will NOT tell their patients that clobetasol causes thinning of the skin. That is what all mine have told me ugh.
I'm 55 and up to all this I was having a full and happy sex life with my husband of 30 years. This has completely changed my whole personality around a physical relationship and my whole life really because I'm just not me anymore. I'm very sad about it. Of course I know there's more to life than sex and priority is love and life and health but the change has been so sudden and dramatic I'm still reeling. I DO talk openly to spread the word to other women. I almost feel a freak on here because the focus is on flare ups and itching or cracking or soreness (understandably) and I don't have them so I can't join in the conversations or DO anything to help myself. I can only watch helplessly in the mirror as I change. It was lovely to hear of your age 50 friend sounding like me. That sounds weird - of course I wish for her she didn't have it. You know what I mean. Curiously I have already tried the 5:2 diet once for weight loss. I didn't stick at it, I'm poor at dieting but I will think about it again. Thank you for replying and for the hug. Hugs back to you especially for your your biopsies. I had one for my diagnosis so 'ouch' yes.
Splitting at the entrance to the vagina has been my lifelong symptom. Seemed even worse after my episiotomy. Having seen Dr. G's presentation on the surgery you had, it sounds like you won't need it done again if you use the Clobetasol as he instructs. Lucky you. I don't normally long for youth, but if I could have had that surgery when I was forty and had the meds to keep it that way... Oh, well, I've had my lifetime share of multiple movings of the earth. I'm happy to be comfortable and unlikely to get cancer.
I did have one yes. Definately have LS. Irony around the pain of the biopsy and the discomfort of stitches and now that biopsied area just doesn't exist any more! I'm really not convinced my loss is down to the menopause. When I first went to my GP she said the things I'd noticed about myself would be because of the menopause. I really had to push to get her to look because I knew it was more than that and she realised it really was more than that and I was referred. Yes post menopausal women can experience less plump inner labia (and outer if it comes to that) and maybe they'll look a bit smaller, shrunken but NOT disappear off the face of the earth! They vanished practically in front of my eyes. Each time I looked in the mirror there was less to see. I really appreciate the input Sha, I'm just not convinced that's all
Hi Chrissy--You have a similar story as mine, too. I wouldn't have known that I have LS if intercourse hadn't become suddenly very difficult and unpleasant. I thought that it was the new changes of menopause (and so did my doctors) for about a year even though I am on bioidentical estrogen (applied to my vulva). I now can see the white plaques all around in that figure 8 area that Dr. Goldstein says is common for women with LS. I am hopeful that the steroid (just started this past week) will put this into remission before I have too many other physical changes. My partner is understandably worried for our love life and so am I. I hope that you are able to stop the progression of this. --Suzanne
Hi Chrissy I don't get any symptoms either, I did not know I had anything , I was told after a cystoscopy , after3 yrs of uti, I am post menopause and the Uroligist said I had it as my ureathra was tight. When I was referred to a gyny he wasn't sure but I did have a skin bridge, across the opening ( news to me ) although I was just starting to have painful sex, but I thought that was due to dryness. I also have a pale area around the ureathra nr to opening . The bazaar thing for me is when I stated using Dermovate about a week in my outer lips went much thinner, lost a lot of the plumpness and have shrunk so the inner lips prodrude . I am not sure but I think I maybe getting symptoms in the bum cheeks as I get a tingling there, so started using a little Dermovate there and it seams to make it worse.