OB says “It’s likely LS or skin cancer”

Hi there, you definitely need to make an appointment preferably at a Vulva Clinic. If that is not possible a dermatologist or gynaecologist would be okay, but first, make sure that they are familiar with LS.  The problem with seeing your OB is that it is unlikely that she would have seen this kind of thing before, and has therefore immediately put the fear of God in you by mentioning skin cancer.  Once you are able to see a doctor that can visually diagnose you with LS you will start to receive the correct treatment.  The steroid cream you were given is the right course of treatment but you need to continue using it for a while to see results.  Also many women on here swear by using Borax, there is a thread on here that you might want to search for and read. 

In all the years that I have been posting on here I have never once read of anyone having cancer from LS, it is very very rare.

Take it easy.

 

I totally agree with guppy, you need to find a vulvar clinic or specialist that is knowledgeable in LS. When I first went to one doc he said it was yeast and treated me for several months. Then the white patches appeared and he did biopsy. It showed LS. He gave me a steroid cream (clobetasol), told me to use it twice a day for two weeks and then only if needed after that. He also told me it wasn't a strong steroid. Well he was wrong on both counts. When I went home and did research on LS I saw how wrong he was. I immediately found a specialist who is knowledgeable in LS and went to her. That was three years ago and with her help and her knowledge I have been able to keep the LS under control. I used clob twice a day for two weeks then went to twice a week for 9 months and then down to once a week which is what I am currently doing and will probably have to continue forever, but all is well. She said risk of cancer from LS is about 2-4% and she has only seen one case of cancer and that person did not follow instructions. Stay positive and good luck.

Hi there, I totally agree with guppy. Cancer is VERY rare. I would LOVE to have £ for every one of us LS sufferers that have been treated for thrush ! For a year in my case 😈.

The description you give sounds like LS all day long but you need to go to someone who knows what the hell they are talking about ! I cannot imagine the pain you endured with that pure lavender oil. You need to be on DERMOVATE/CLOBESTROL. Used every day for a month, then every other day for two weeks then twice a week as maintenance unless you have a flare up. It's very important to run in the steroid cream for at least 90 seconds. NO gynae/dermatologist EVER tells you that but its very important. You also need to use a barrier cream all the time. DO NOT USE VASELINE. I use HYDROMOL (put on at least 20 mins after steroid) this will moisturiser the area and feels so much more comfortable. It also stopped urine irritating/drying/ burning the skin. I also spray with water& bicarb solution after using the loo.

Lay off sugar, this affects a lot of us we have noticed. Stress is also a major cause its flare ups. Really hope this helps . Do not worry about cancer, I'd be amazed if you did have it. The white plaques should go in the first month of less usually though obviously everyone is different. Please let us know how you get on . You will get lots of support here. Most of us have learned so much more about LS and it's treatment from this forum than we ever have from any Dr or consultant. Good luck

Insane itching and white skin goes with LS. I also would get "lumps" etc before I got diagnosed with LS but once I started using steroid, I rarely got those lumps and sore pimples etc. anymore. 

You should use the steroid to control LS.  My white patch disappeared after using steroid. 

However if you use steroid, be aware you will possibly get a negative biopsy result even if you do have LS. 

Get yourself a decent gynaecologist who is informed about LS. I have a wonderful one. Makes a huge difference. 

Hi MamaBear, I think you need to find another dr, the insensitivity is mind blowing.  Just a quick reply to reassure you my minoras were white as snow this time last year with cuts and the squishy that you mean almost like pus infection was inside but that is actually the L S.  Used clob and it changed it to pink the petechia went as well, I use YES moisturiser and clob once a week touch wood still pink now.  Read all the threads on here and slowly you feel better,  i was like you had awful first diagnoses who had me in tears but after finding someone better and coming on here it sunk in that it’s quite common.  You will better I promise. 

Sounds like it is LS. The white patches and itching are the symptoms for LS. Most Dr's familair with LS prescribe Clobetasol. It is a steroid that keeps it under control. Why a Dr. would say it is cancer is crazy. You need to find a Dr. that knows about LS and knows how to treat it. Vulva Cancer can happen, however if you manage the LS, highly unlikely. I use the Clob 3 times a week before I go to bed. I also use Estrace 3 times a week before bed to keep the skin healthy.  I apply them on separate nights.The LS is inflammation in the deep tissues of the vulva and is caused by your immune system. I also have Psorasis on my hands and bottoms of feet that comes and goes. Also related to Immune System  I am also Type 2 Diabetic. I think all of my conditions are related to my Immune system.

Alot of women on this post recommend using Borateem  (Mule Team Detergent) as a sit bath. It helps alot of women. You mix 3 tb. of it with warm water and soak your bottom in it. The LS also affects the anal area. Not sure that I have the directions correct. I clean myself with wipes with aloe (frangrance free after I urinate and have bowel movement. Really helps. Also if I start getting some itching, I clean myself with the aloe wipes. I can't help wonder if women who had tubal ligations are at higher risk for LS. I had a tubal ligation in 1984 after my third child...I was 36. I only used birth control for 5 years in my early twenties and then none after that.   My first symptoms began about 15 years ago with just itching. Thought it was a yeast infection. Then about 11 years ago, went for Pap and the Dr. was concerned about the white spots beginning to appear. Eventually went to another Dr. and he did not do a bioposy. He knew what it was. I now go to a female OBY Dr. She is on top of it. She assured me that since I keep it under control, that to not worry about vulva cancer. She said women who ignore the symptoms are the ones who might eventually develop vulva cancer.    Hope this makes you feel better. There are so many women who are developing this. It seems like once women go thru menapause, it seems to happen.

I cannot even begin to express how grateful I am to read these thoughtful and informative responses.  Thank you all SO much.  I have felt very alone in all of this (until now) and I am beyond happy.  I’m not certain why she did not prescribe the “Clob” you all refer to but I will ask her to prescribe it tomorrow.   I was given tri-something???  She cut me off of it though as she said it will damage the delicate tissue.  Hopefully she will be ok prescribing the “Clob”.  I have never heard of a vulva clinic.  Not sure we have those here.  I’ve always just visited my OB.  I’m assuming that is a term for a “planned parenthood” type of clinic??  I have Kaiser if that helps anyone understand the system I’m working with.  I’m having my biopsy at 10:00 am tomorrow morning.  I’m nervous but not as nervous as I was before reading your responses.  It’s a “punch biopsy” and a “colposcope”.  I read the recovery is awful.  Hard to believe what you read.  When I told my OB I was freaked about the pain from the biopsy she said, “Ah, it’s no big deal, you’ve had five vaginal births, this will be nothing in comparison, you will only feel a sting from the injections, piece of cake”.  My Aunt who is a nurse told me otherwise.  She said the injections will likely “hurt like a b***h” 😂 and to ask the nurse to squeeze my hand.  I just want to get it over with.  I hate needles.  I really hate needles down there.  No thanks.  I’ll try the borax.  It’s interesting about the sugar.  I have noticed what feels like a flare up when I have red wine, beer, and heavy sugar (I had pecan pie and the next morning was bad).  I also find it interesting about the tubal connection.  I had mine one year ago.  I wondered if there could be a connection.  Perhaps this could be hormone connected by way of the tubal (even just mentally) shifting my hormones.  I’ve also nursed babies for what feels like forever (5 kids x 18 months each) and I weaned my last little one last December.  If there was some type of infection (HPV flaring up) I wonder if this could be my body fighting it?  One of you mentioned this is inflammation caused my the immune response.  I have started boosting my immune system and I’m taking probiotics.  Hoping this all will subside with a combination of things you all suggest.   Nice to have some positive words and reassurance.  I do have estrace here that I was prescribed while nursing last year (pain after delivery) so I will try that too and see if it helps.  I am grateful to you all.  I had chills and tears in my eyes reading these.  I finally don’t feel quite so broken and alone.  Feel a little more feminin again and not quite so leper like 😉  I appreciate it very much.  Appreciate you all very much.  Thank you!! 

Please report back how you got on or we’ll be bugging you lol.  You could ask what exactly the tests they are testing for, L S, Lichen Planus or any other skin conditions. Wear baggy crutch things MamaBear it’ll be comfier too.  it’s good she’s using a colposcope, doesn’t go in you just a way to look magnified at what they are doing, best wishes to you x 

Hi MamaBear, I'm so sorry to hear you've joined us, but you'll find a wealth of information, support and advice here. Many of us have been misdiagnosed, ignored and badly treated by the medical systems everywhere, I'm in the UK and it happens here too. Read 'An Experiment with Borax,' it's a thread in this discussion group. Also, make yourself a cup of tea and sit down to watch a video that's pinned at the top of this forum, it's by a Dr Goldstein, a specialist in LS. Think of it like Diabetes, it doesn't go away but it can be managed to make your life normal again. In time your care routines will become part of your life and you won't even notice them.

Here in the UK I'd advise someone to find a Vulval Dermatology clinic, they see a lot of LS. Not sure what you've got over there. Get Clobetasol ointment rather than cream, apparently the thing that makes the creams white can irritate, this goes for any product that you use down below. All the eczema products tend to come in cream or ointment versions. Always go for the ointment, it has a Vaseline-like texture, but don't use Vaseline, it won't do you any good.

Keep the area moisturised and don't use soap or anything with fragrances there, they will irritate you. Have a look on the threads here to see what people wash with, I don't think UK products are available where you are. I use a tub of over-the-counter stuff called Epaderm (not Epiderm, that's a different product) recommended for washing  for Eczema sufferers, it's got no fragrance. Watch out, even things called 'Simple' tend to have fragrance in, read the ingredients. Many people use Emu oil,  coconut, olive, jojoba or avocado oil after every toilet visit and at night. you can put a few drops of essential oils in them if you like. It's soothing and feels nice. You'll be more comfortable if you use a small spray bottle and rinse with water after every toilet visit, urine can irritate already sensitive skin. Just leave them in the bathroom and see how you get on.

Also everyone seems to react differently, so follow up the things suggested here but, if it's not for you, move on and try a different recommendation. In time you will find what suits you personally. Do keep checking and asking for advice, we are all here to help you, and each other. We all know what it feels like.

I use Borax and the itch went instantly. It's different for different people though. You only use a pinch or two, two much can be painful. I don't know why it works, but it does. Read the 'Experiment with Borax' thread though, and get the amount right.

Good luck with the biopsy, hugs and good thoughts to you.

Bridge

Hi MamaBear,  Since your most recent post about remission I found this older post of yours.  I see you got no hearts from it so it probably got lost right away in all of the other posts from so many suffering from this.  But I read it and I felt so bad for you.  At the same time, since I just got diagnosed with LS two days ago and read your remission post, I am so hopeful and grateful to you for your posts.  I am now using Borax and will buy some lavender to use.  

​I hope your kids are doing well.  I raised four myself so I understand your title MamaBear.  The loves of my life!

I hope you continue to do well and I thank you again for your information