Hello everyone. After spending the weekend researching about LS, I finally found this forum which is helpful.
I had my baby about 6 months ago. About 3 months ago I was having some itching on my left labia - not responsive to OTC yeast creams. Did a home exam and decided to go to the GYN. She did a biopsy which was positive for early LS.
I’m already a nervous and anxious person. I always worry and assume the worst will happen in any situation. That being said, you can imagine how this diagnosis has affected me. I’m scared of the long term consequences of LS. I know the risk of cancer is small but it’s still a risk that I’m terrified of. I don’t have any fusion at this point but I do have a white spot on my left inner labia. I’m on clob now - haven’t noticed much difference yet.
I’m so depressed and anxious I could cry at any minute. I feel like my life is ruined.
This thread has been helpful and I’m hoping to hear from other young people. I was also hoping to hear from people who have had this for a long time (ie 15, 20+ years) - has anybody had it this long, under good control, and not had fusion or other negative effects? Has anybody had it for even longer than that and not had cancerous changes?
Any advice and reassurance would help. I’m so scared and nervous, and it would be great to hear from you.
Thanks in advance and thanks for taking the time to read my story.
Sorry mean to write “this” not thus in the title. Stupid autocorrect.
Please don't let this ruin this precious time in your life..use the clobe (don't over do it! A tiny bit how's a long way to much will injur the skin), stick to Dr. Recommend course of action. I was diagnosed in April and am know symptom free. Moisuise with olive oil 9 hours after clobe to keep moist.
Xo
Caution stress whether physical or emotional will cause a breakout also. I've suffered for around 20 yrs, another lady on here was over 15 yrs. My doc says they think
Thyroid problems also will cause it at times. Apparently thyroid issues is also an immune problem. Keep a close eye on it can cause fusing before you realize it.
Not sure what Clob is but I expect it is a steroid cream. If it is it can cause thinning of the vulva also other problems all over body. My doc says even a steroid cream for your HOHo will send effects all over your body it doesn't just sit on one spot it is absorbed. Good Luck
That's true as it it over used it seems quite a bit. I Kno I slathered it on when I first got it...anyway yes it is a steroid. I have had no adverse side affects. I think the key is the amount. I used half a peaceful size not a full pea size after I learned less is more
Good to know. How have you managed over the last 20 years or so? Do you have significant atrophy or changes? Do you need biopsies frequently? I know everybody is different but it helps to know what others have gone through.
Scar tissue, fusing completely of libia. Narrowing of vaginal entrance and urethra. Uncontrolled at this time. Bladder incontinence with UTI's often. Bladder cystoscopy shows bladder is NOT the cause of frequent UTI's. Unable to have intercourse, tissue to thin and opening to tight from scarring. New BIOPSY last week to find depth so DiVa laser can be adjusted for correct depth also having PRP(O-shot) next week, both at same appt. Hope this helps you, go look at these videos.
https://coyleinstitute.com/patient-intake-video-library/
Oh gosh, Stephanie I feel for you. AND your precious baby. Are you still nursing? She/he needs you so much right now. I wonder if you have had the opportunity to get to a functional medicine doctor or naturopath or homeopath about your long term anxiety? you really deserve to feel lots better and your husband a little babe too? in any case until you an get a good blood workup, it might help to know that many of the nutritional supplmements that i found onine that are implicated in autoimmunity happy to also help with depression and anxiety. MAGNESIUM, vitamin B12, B6, omega threes, etc please do read my article to find out about each of them..
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
oh, and exercise the really get the aerobics is part of the autoimmune protocols that I've seen and that oxygen really helps with anxiety too. Blessings,
First of all, I’m so sorry you’re going through this. I think I had LS when I was a teen. Had CRAZY anal itching. It quieted down at some point but eventually as an adult I developed itching on one spot on my labia majora and sometimes on my clitoral area possibly too. That went on for years as I remember. Finally it escalated to the point I couldn’t bear the intense itch anymore. I was diagnosed soon after that at about 45 yrs. I’m now 47. I started steroid and did natural things and my white patch disappeared. However, the itching spread even more. Most of the time, my LS is easily managed now. I go get check ups for the cancer which is rare but I prefer to do it for peace of mind. So far , so good.
When I was first diagnosed, I fell apart. Crying, panicking, hardly able to eat.. terrified. I also am an anxious person.
With time though, I found this site and two ladies on here helped me SO much. I have gotten careless and have more itching in general because of it but if I follow this routine, it’s usually easy to manage.
Wash off that region at noon and when sweaty. Shower or bathe at night. (Extended sitting in Hot water makes it worse). Barrier creams or oils after using the washroom. Cold pressed olive oil, emu oil, castor oil. A product called Emuaid has helped me incredibly! I don’t ever want to be without it! If I’m out for long periods or potentially will be sweating, I will sometimes wear a thin pad and Vaseline. Baseline should not be used too often. It’s a wonderful barrier but your skin can’t breath but it’s helpful for a barrier in testing situations. Reduce sugar and gluten. Sugar is like gas on a fire. Clementines cause me to flare up and so does chocolate sometimes.
I don’t think I have any fusing but I feel my labia are shrinking possibly. However, that may also be related to perimenopause. Stick around here. This forum has been so helpful.
And do get your our thyroid levels checked. I also have thyroid problems. There seems to be a connection for a significant number.