Gynecologist vs Vulva Specialist

Oh my goodness flower2power.  Thank you so much for all this information.  You have convinced me to see a specialist.  Tell me about your experience with the 50% laser vulvectomy.  What is that and did it hurt? I feel like all my holes are closing up.   I'll look for a specialist in my neck of the woods.

Hi, I am not sure where you pulled those figures from but I couldn't find anything anywhere that supports your claim that 11% of women will get cancer if they don't use the steroid cream weekly.

  

I notice that your a new member and it is good that you feel like you have finally found someone that you have faith in but I cannot agree with much of what you say.

  

I agree that some women often want to avoid using the Clobetasol cream but they are usually reassured once they understand how important it is...after all it is all we have at this moment in time.

Suggesting Cancer will be the end result if we don't use the Clob weekly doesn't make any sense to me at all and isn't really helpful, and yes a Vulva Clinic is definitely the best option but some women don't always have them near where they live.

 

A  CO2laser vulvectomy is a surgery the specialist can do in office.  I was put under and they used a CO2 laser and burned about 50% of the surface of my vulva where the lesions were pre-cancerous based on a biopsy.  the upper right side including my clitoris and the lower left side down to the opening.  There was significant bruising, swelling, and of course where the laser was used was raw.  Sitz baths with epson salt, baking soda, post pee spray of saline, baking soda, and hydrogen peroxide, and ice-ing all helped.  Of course it hurt.  . No undies or pants for a couple days and then I just kept things loose for work.  Sitting was more uncomfortable than walking.

Healing happened within a week and was mostly good after 2 weeks, and I'm back to riding horses and dirt bikes at 3 weeks.

My initial visit with the specialist cost $500 - I'm in AZ, usa.  Prior I was living in rural CO and there was no good care or specialists any where close.  Though when I realized their were vulva specialists that focused on LS I was looking to plan a trip around a DR appointment.  So I get that it's a challenge to find good LS care.

It is not healthy or ok for your vulva to be doing what it is doing.  

You are worth seeing a specialist and getting this LS thing under control.

I know women are tough and do way better taking care of everybody else, but this is a great opportunity to learn how to prioritize self care!

In good health 

 

Hey Guppy -

I'm not really sure where you are coming from in your message.  I was answering a question regarding seeing a specialist.  And it was a life saving experience for me.  Why discount my very significant personal experience?

There could be someone out there that my information can help...  so what if it's not you. 

I was diagnosed with LS 3 years ago, though like most, probably had it for awhile prior.  I found this site in my efforts to heal myself just as most of us are trying to do.  

I am a health care professional with lots of education and experience - and yes I have done a s**t ton of research to try to actually understand what is going on with my body's systems to treat myself whole-istcally.  Nutritionally, emotionally, and physically.- and not just the vulva/vaginal area - but hormones particularly estrogen can help the skin in the vaginal area to heal and not be so thin and susceptible to the LS attack.

For 11% and yes, that was a number I did find somewhere along the way,  sorry I do not remember the source - probably Mayo Clinic. There is a serious reality of developing Vulva Cancer from the constant lesions.  They are abnormal cells attacking good cells.  This is science not my opinion. Definition: 

"the disease caused by an uncontrolled division of abnormal cells in a part of the body."

auto immune disease Definition:

A disease in which the body produces antibodies that attack its own tissues, leading to the deterioration and in some cases to the destruction of such tissue.

Basic Gynocologists do not have the experience or specialty to do much more than prescribe Clobetasol.  There are other treatments out there that can help.

I have not said anything that is not true from my experience, which is where I am writing from...  My suggestion that cancer could be the end result if Clob isn't used is what my $500 visit to a specialist revealed.  There is no definite, but for those out there with severe lesions and fusing a specialist could help.  LS is serious.  And it may not kill, but wrap your brain around having your clitoris cut out because your LS lesions got so bad and your own self care and small town gyno wasn't good enough.  I am coming from a very different place than you and others on this site.  And if my new member status input can help someone avoid that hell, than I'm all good.

In good health

In good health

 

Hi flowerpower,

Just because you are a healthcare professional doesn't give you the edge on everyone else.  The whole tone of your message sounded high handed like you were telling us all something that we don't already know.  A lot of women that post on here are very well informed with regard to LS.  

Also paying $500 to visit a specialist doesn't necessarily mean anything as most specialists aren't that special when it comes to Lichen Sclerosus in my view.  

Where I took offense is from your statement when you said.. 

"My take on the way too many people on this site are suffering so terribly is because they are trying to manage something on their own that is way too serious.  5% will get vulvar cancer and if these people are NOT using Clobatasol at least 1x per week their chances of getting vulvar cancer increases to 11%.  

I don't want to be unkind but you came on the site in a preachy way, with no source mentioned to back up your claims.  The truth is that many women manage their LS very well and often don't want to use the steroid cream unless it is really necessary, and so telling them that they may get cancer if they don't use the cream, as I said ain't helpful.

It does sound like you have had a rough ride, but remember we are all different.

 

Hi flower2power.  Thank you for getting back to me. So being pre-cancer, not sure what that means.  One either has cancer or they don't.  Did you do the laser as a preventative?  It sounds like a wicked procedure.  But you are okay now?  So how do you manage your LS every day?  

Please excuse me for sounding preachy.

I have had a worse case scenario - I was addressing Susan specifically with my reply to her request regarding Gyno or Specialist, and others with serious lesions and fusing trying to treat their LS with home care products and small town Gynos.  NOT those who have figured out a way to manage their LS comfortably and not have it negatively affect their life style.  And it's only a very small percentage that will develop Vulvar cancer so no big deal.

Like I said IF my info here can help someone with serious symptoms - that's good.  And yes, we are all different.

Pre-cancer when biopsied presents as not completely healthy cells,  basically cells at risk.  If there is an area of lesions that is not healing that would be at risk, or if there is a change in the 'architecture' of the skin - you can see an edge around the lesions - this just from my own experience.  So not sure if that the laser could be considered a preventative - it's like treating skin for melanoma.

I manage my LS with Clobetasol maybe 2 times a week dependent on what's going on - if I feel it or see it then I use it, if not - not.  I spritz after peeing with a saline, baking soda, maybe apple cider vinegar, or hydrogen peroxide - mostly because I am still healing post surgery.  I don't eat sugar, alcohol, gluten - and veer towards alkaline, Calcium and vitamin D, and probiotic supplements, I just started with topical very low level estrogen, aquaphor and castor oil as a topical for protection and moisture.  things are good enough for me to ride horses and dirt bikes and masturbate. (I'm single and feeling like I can start thinking about sex again!)

However you decide to proceed best of health to you!

Thank you for the additional information.  I"m sorry if I asked this question before, but did you have fusing?  I do and not sure I can unfuse.  The LS was on one side, now is working its way to the other side.  Seeing my doc on July 9th. Maybe I'll start some estrogen therapy.

I did not have any fusing.  I had lesions.

I also when I do wear panties (not often) do not wear ones with seams, haven’t worn jeans in a while but it’s summer so that’sundresses it is, wash with a very gentle cream wash, laundry with borax and a sensitive skin detergent, no dryer cloths, ,  meditate and visualize a bright white light of healing, Epson salt baking soda soaks once a week, I think that’s about it.

I hope your Dr appt goes well.

  I wish you the very best.  

In good health

Clobetasol and other similar corticosteroids do help keep skin cancer at bay, so my doctors say - two very prominent doctors at UCSF told me so, one is a gynecologist and one is a dermatologist, they have collaborated and Ive met a few times with both of them in the past, when I was first learning about LS and trying to make sense of what was going on down there. There is proof of this that I’m sure we can get our hands on, and clinical trials to show this I believe they can be found online and I can try to provide a link if requested. Although I DESPISE Clobetasol for so many reasons (its evil), it is supposed to keep LS calmer and Ive been told it can slow down the fusing, unfortunately i dont “buy it” because that has not been the case with me, in fact the more I use it, the worse I get. My LS has advanced since using Clobetasol and there is no slowing down. Also, regular usage of these very potent steroids causes the adrenal glands to stop producing natural hormones that the body needs to function, so when you stop, some can experience adrenal issues and majorly compromised health. I know that using Clobetasol lowered my immune system dramatically. So here we are with this awful auto immune disease, being told to take the most potent steroid on the market to help a condition, only for many of us to learn it doesnt really work (yes for some it does and thats great!). Now that Ive reduced to only using a tiny bit every two weeks, I’m feeling more hopeful actually. I’m using the support and success stories from members of this group to help me on my path. I have created my own sprays and salves with ingredients suggested by this group and am excited to see what happens. We need to all become our own doctors these days as the medical world has failed us due to not enough research on LS, thats why we are here, right ladies? I also googled LS a few weeks ago, found someone’s blog/success story and purchased her product, Ive been using it for 2 weeks and excited to see what happens. In her case, after one month her skin started to return to its fleshy healthy color and she saw some unfusing (someone else in this group had the same experience using their own solutions that I believe involved borax)/ Athough my condition has advanced (im white all over down there, its not pretty) and Clobetasol has done NOTHING for me, I’m feeling someone hopeful that there might be some changes in the next few weeks! Wish me luck! And check out lifeworks skin essentials...

Hi Lynne,

"Clobetasol and other similar corticosteroids do help keep skin cancer at bay, so my doctors say - two very prominent doctors at UCSF told me so, one is a gynecologist and one is a dermatologist, they have collaborated and I've met a few times with both of them in the past, when I was first learning about LS and trying to make sense of what was going on down there. There is proof of this that I’m sure we can get our hands on, and clinical trials to show this I believe they can be found online and I can try to provide a link if requested."

I'm not sure I believe it.   Firstly, the number of letters on this site that I have read from women all complaining of the constant misdiagnosis and ignorance of their doctors...its shocking.    I stopped believing in doctors a long time ago.  That's not to say I don't think you should visit your doctor.  I just think you need to be your own advocate and not BELIEVE everything you are told.  There is not enough current research being done on LS to draw conclusions and as you said yourself the steroid cream in some instances can make things worse, much worse.

 "Although I DESPISE Clobetasol for so many reasons (its evil), it is supposed to keep LS calmer and Ive been told it can slow down the fusing, unfortunately i don't “buy it” because that has not been the case with me, in fact the more I use it, the worse I get. My LS has advanced since using Clobetasol and there is no slowing down. Also, regular usage of these very potent steroids causes the adrenal glands to stop producing natural hormones that the body needs to function, so when you stop, some can experience adrenal issues and majorly compromised health."

I believe the steriod cream is only good for removing the white plaques of skin for some of us and dealing with clitoris pain/soreness, other than that it can cause more problems.  I have a clear memory of applying it to an open sore on the advice of someone on this site.  The next day not only was the sore worse but I had a horrible spotty red and raised LS rash around the whole area.  This was pretty conclusive and I never used it again on sores. 

With regard to fusing, I'm guessing that the fusing for some of us is a natural progression of the disease.  Some are more fortunate than others and seem to be able to hold it off longer.  Speaking personally, I was diagnosed in 2013 and for a longtime I was fine.  Recently, in fact in the last year is when I have noticed my Labia minora is disappearing quite rapidly. 

"We need to all become our own doctors these days as the medical world has failed us due to not enough research on LS, thats why we are here, right ladies? 

I couldnt agree more.  I have to confess I feel exasperated that so many women are having biopsies when it is not always necessary.

 "My LS has advanced (im white all over down there, its not pretty) and Clobetasol has done NOTHING for me, I’m feeling someone hopeful that there might be some changes in the next few weeks!

Good luck...are you not interested in trying the borax?  Many women swear by it.  I will admit I haven't gone down that route as I suppose I am resigned to what is happening with my body . 

Hi,  I too have lost my Labia Minora and the LS is now working on the other side.  BUT, the Eumaid cream seems to be helping somewhat and I mix a tiny bit of Clobestol with it when the itching is unbearable.  The acupuncture didn't help, not sure that the herbal pills are helping but continuing with it and the vitamins.  I am now on to trying Cannabis cream and looking to get a hold of that which is not easy because LS is not on the list of acceptable diseases for treatment.  I'm trying to do a work around.  Every day is a new architecture down there.

Hi guppy,

I was meeely relaying info shared with me re skin cancer. Shared by doctors with good reputations. I never said that it’s worked for me as you can see from my comments that my condition is progresssing and clob. is not showing signs of improvement, which is why I’m in this group trying other things. In fact my husband has had horrible experiences with topical steroids so I’d be thrilled if the info about cancer wasn’t true or if there were other natural solutions.. If you don’t believe what my doctors told me and thousands of other patients with LS, you are entitled to your beliefs. 

Yes to borax, just haven’t had access to it yet as I discovered it was useful for LS once in the Netherlands where I can’t find it, will start with it in three weeks when back in Cali.

Hi, I replied to the original question but wanted you to know that I'm seeing a vulva specialist. Based on her examination, she said that at first look, it appeared more like that I suffered from vitilogo. Since I'm a black woman, the color of my vaginal and anal area has lost its pigmentation. In my opinion it looks horrible. After a thorough exam, she determined that I had a mild case, mostly around the anal area and slight fusing. She said the clob was too strong and she practices the "less maybe best" approach and prescribed a different ointment and proceed from there.

Hi angela, I am glad to hear that you got to see a vulva specialist.   At least you know now what you are dealing with and it sounds like you have found someone that knows their stuff..that's good news.