Please read!!! Suffering for 5 months! Could this be lichen sclerosus?
I know this is long but please someone read this.
You can skip down to the last paragraph where i try to summarize everything.
Earlier this year in February 2020 I shaved down there and started experiencing some itching. I didn’t think much about it. Fast forward to the first week of March and the mild itch turned into an intense itch that was localized to the upper area of the labia majora around the area where the clit is but on the part of the skin where the hair grows. It was sooo itchy that sometimes it would wake me up at night. That lasted for a few weeks. During that time I tried applying some hydrocortisone and it didn’t really do much. In April I bought some jock anti fungal itch cream and within 5 days it reduced the itching by about 70%. The upper part of my labia was still itching so I went to the doctors. She looked at my skin. Didn’t notice anything abnormal and prescribed me Fluconazole suspecting it was a yeast infection. I took 3 pills and after I was done with treatment I still had itching. Up until then the itching was just on the skin of the labia majora but around this time I developed a random itch that felt like it was on the mucosal part of the labia minora. It is not constant but it seems to flare up more some days and it feels like I have needles stabbing the labia minora and I have to move around to “scratch” it for it to go away.
Anyway, after I was done with the Fluconazole I did a 7 day treatment of monistat. No relief. Called up my doctor and she then gave me Clotrimazole and betamethasone cream. Used it for about 5 days and didn’t feel any difference so I stopped using it and finally was able to see a gynecologist on May 29. He looked at me said my vulva looked irritated and suspects I have PCOS and that my testosterone levels is probably causing irritation and that when I lose weight my symptoms will go away. He ordered some bloodwork and took a culture swab and put me on Metformin. I have been waiting almost 2 months for my follow up appointment however I already looked at my results online. All my hormone levels were normal and swab came back normal. The only abnormal test was my insulin resistance which I am not worried about because I am already on Metformin and losing weight.
I don’t believe PCOS is causing this chronic itching. My symptoms are not as bad as they were in the very beginning but they are seriously taking a toll on my mental health because it has been 5 months already and I still have no definite answer. I thought that maybe I was having an allergic reacting to something even though I had not changed anything in my routine. I changed soaps including body wash for sensitive skin, stopped using panty liners, switched pad brands, switched toilet paper, even stopped washing with soap and only rinsed with water and still no relief. I thought maybe the skin was really dry and i started applying coconut oil to the labia and didn’t really do anything. Sometimes when I use a cream moisturizer it feels a little better. But I try to avoid putting anything down there to avoid irritation.
The best way I would describe my current symptoms is a prickly feeling on my labia majora especially on the upper part of my labia by my mons pubis. It’s like that feeling when you shave your genitals and the hair starts growing back except this happens regardless if the hair is long or short. Sometimes it feels like I have tiny tears or cracks on my skin and it will either itch or sting but I dont see any cuts on the skin. Most of the itching is on the left side of my labia majora however the right side will itch sometimes too. A random itch on the left side of my labia minor that feels like I have a needle poking the mucosal skin. I have looked down there with a mirror and the skin on my labia majora looks wrinkled but im not sure if it has always looked like that, and on some areas it looks like patches of little stretch marks. The weird part is that I only have symptoms when there is friction to that area like when I walk around and the skin rubs together, move or when my clothes rubs up against the skin. If I’m just sitting down I don’t really feel anything.
I have been reading online about lichen scleorosus and lichen simplex. I heard that lichen simplex can be random and triggered by stress. Around the time that this started I was extremely stressed because I was going through a pregnancy scare. The itchy patches that initially started all this could have been triggered by all that stress? and maybe I damaged my skin by all the intense scratching that it then turned into lichen simplex? I’m inclined to believe that I might have lichen simplex but the labia minora mucosal itching is throwing me off because lichen simplex is usually confined to the labia majora area only. I can’t really say that I notice any white patches like you usually do with lichen sclerosus but I could have a very mild/early case?
Anyone who has lichen sclerosus or lichen simplex have you experienced any of these symptoms? I am sinking into a deep pit of depression stressing over this. I finally have a follow up apt with my gynecologist on July 23 and I am going to ask if he thinks this it what it is and ask for clobetasol. If not a biopsy.
I attached a few pictures marked where i feel most of the itching and a close up of the wrinkled skin. i swear i see a figure 8 around the vulva and anus with slight lightening of the skin. I have tried 1% hydrocortisone and jock itch cream along with natural remedies such as coconut oil and a few sitz baths. i even changed all my soaps and products including toilet paper. 5 months later i am still suffering. Any comments or suggestions would be greatly appreciated!!!
Dear Difficult,
Most of us here who write consistently have suffered with the LS for years. Your picture presents a typical LS appearance and that’s good if it is not hurting you. At 1 year and 7months, 11 doctors and no answers, all I have is pain. Have tried nearly everything. Clobetasol does little. Topical estrogen about the same. If it is LS, then the chemistry of the skin has gone awry. They say “no cure” but that’s because it is primarily a woman’s disease and they have not BOTHERED to find a cure. If it was mostly targeting men, you can bet there’d be a cure. Yesterday. The reason for the skin gone bad is not entirely clear. Could be thyroid antibodies, could be genetic, or even a Lyme or an HPV infection. I have not found the answer after months of searching med journals. But I am not giving up and urge you not to do either. You are early on in this battle. General recs on what to do are: no soap, no perfumes, no shaving!
What were the results of your recent doctor’s visit? I agree about seeing the figure 8. And I would absolutely not shave an area that is already itching. I have no idea why this has become popular. It is just asking for problems.
I don’t experience the classic LS itching, just a prickly feeling. At one point it become a buzzing feeling. People have very different symptoms of what they tell us is the same disease.
Please PM me if the doctor the gave you any new info. We are no longer informed of any new posts, unfortunately. Thanks.
I just posted this and don’t see the envelope for private messaging! Moderator, is that gone also??
Unfortunately my recent doctors appointment was little to no help. He was not convinced that theres anything wrong with my skin, prescribed me Lotrisone and told me to lose more weight. The only reason I shaved was because I thought that maybe the prickling feeling was being caused by my long pubic hair since I had not shaved since this all started 5 months ago. Surprise I still have symptoms regardless if the hair is long or short. I know it was pretty dumb but it was worth a shot. I hear a lot about people having the buzzing feeling that you mentioned. Can you describe what that feels like?
Buzzing is all I can tell you. No other worth seems to fit. Another woman on this forum said her doctor told her it was a sign of LS. I didn’t feel it until months after being diagnosed and using the meds. As I was away I called my dr and she said to use more of the steroid. I was using it every night! When I finally got to see the her months later she said it had spread somewhat and put me on the stronger clob. I have since gone back to the mid level steroid as the clob got irritating. Who knows? We are all flying by the seats of our pants, so to speak!
Message function is at top right hand corner. Click on and see message history.
The messages I write do not have the envelope on them. Only others’ messages do. Is that only on the page I can see? I don’t remember that being the case before. Yours has the envelope, mine does not.
Do you not have an envelope in your upper right corner? That’s where I go if there’s an orange dot on the envelope. For me on my system, it is the link to private messages. Do you have orange dots under both notifications and messages when someone has replied?
I was referring to the envelope that shows up in the thread of messages. I guess they never show up on our own post because you aren’t going to PM yourself. I didn’t realize that. The moderator clued me in.
your situation and symptoms sound exactly the same as mine im suffering for 6 months, did you get any answers?
wow. I feel like i could have wrote this myself. I have hsv 2 and initially thought I was having a prolonged outbreak. I used my trimmers and have not stopped itching since, that was back in April of this year. im still looking for answers and my research is pointing me towards lichen sclerosis. I went to my gyno and was prescribed a steroid cream to try however she didn’t do a biopsy and all culture swabs came back negative. she suggested to visit my dermatologist if the steroid cream doesn’t work.
I hope you find an answer soon!
does this look like LS how around my vagina kinda looks pale?
I am 61 and was diagnosed with LS about 6 years ago. It’s such a debilitating disease that ruins marriages and lives. I tried everything my doctor threw at me and had little success until I heard about the O Shot from my gastroenterologist. It ABSOLUTELY changed my life. I had the first one in July of 2020 and just had another one this morning because I started to experience itching and a small white patch at the opening of my vagina. I was told from my Gynecologist that I will probably need one every 2-3 years to keep it completely at bay. I can’t stress enough how amazing it has been. It is not FDA approved yet so insurance doesn’t cover it- naturally!!! It costs in the range of $1200 in Houston and is worth EVERY PENNY!!! I urge you to read about it and do it if at all possible. They numb everything with a topical ointment so all you feel is a slight prick and a little pressure. I hope this helps!
Even though you need a biopsy to confirm it, what I see and what you describe sounds like LS to me. I have been recently diagnosed and just posted asking about something similar, and I totally understand that “poking” feeling you are talking about. I have pain and itch in my clit, which follows the usual symptoms expected from LS, but then I have that weird sensation you describe just above my clit where hair grows and a little to the right, also in the hair growth area. It also drives me nuts and is triggered by soft rub. As you said, if nothing is rubbing that skin, I don’t feel anything or not a lot. My gyn told me it could be due to the LS and also to a central sensitization. I have also noticed that it gets worse with anxiety and depression. However, if I have a better mental health day and I am out with friends or something I almost totally forget about the hair poking sensation. It is super weird, but I also am very worried that it won’t go away. I think first you should try and get a proper diagnosis and start the usual treatment and see if it makes it better.