LS flare up feeling rubbish HELP

Have you had a biopsy to confirm LS?

No two dermatologists have diagnosed me from looking. One reccomended i dont get a biopsy as it isnt necessary. However i feel that i need one to just put my mind at ease and again try and fight this horrible condition!

Beverly, just in case your question was directed at me rather than car1811, yes, my LS (Male BXO) was diagnosed by a confirmatory Biopsy ......

Yes, It was to you (little arrow shows intended recipient) as you may be the only male taking part in LS discussions and certainly the only male recommending that car get a biopsy .

My gyn, a specialist in vulval skin issues, was totally confident in her diagnosis. For that reason I was confident in her and never considered subjecting myself to having a piece of skin cut out unnecessarily. It may be different for a male as it is apparently far more rare for males to have LS than females. Was it your doctor's idea or yours to get biopsied?

From what I have read it is more common for females with LS to be misdiagnosed than for women who do not have it to be told they do. Based on that I would not encourage a female to have a biopsy after she's already been told by two doctors that she has LS.

She's stressed enough thinking she may have herpes (despite already having been tested) so will be tested again. My recommendation to car is that she eliminate the herpes concern (which does not entail a biopsy to further aggravate her condition), then return to whatever doctor she was most comfortable (or find another) and continue to treat the LS. Women here offer many recommendations to relieve the discomfort which car may already be trying... I'm not sure.

After her 2nd test for herpes she may decide to go with a biopsy, but that's up to her. However, if she tests positive for LS what will she treat it with if not the same we all are: Steroids and experiments with different options that provide further relief.

i agree with what you are saying especially since biopsies to confirm LS are often inconclusive anyway. i just thought i would add that herpes can also be misdiagnosed/difficult to diagnose as there is no actual test for it and its not routinely tested for in StD clinics. the only way to test for herpes is to swab an active blister or in this case small cut, even then it has to be before it heals over too much which is why i recommended that the OP get seen as soon as it is flaring up. herpes can often be misdiagnosed visually which is probably the only advantage of a biospy in this instance. but i am guessing that two dermatologists can idenitfy the difference between Ls and herpes visually and the concern around herpes is more likely to be paranoia and anxiety around having an issue with that area of the body

Definitely lots of anxiety, although I think maybe it's worse for younger people as they see it as making them undesirable. I'm not consumed by it at all, but then my symptoms are mild for whatever reason and I am not young. Am just trying to find out as much as I can re treatment, but steroids seem to be it. I'm using a hormone cream now for the AV which (also not bothersome so I had chosen to avoid hormones). That was apparently a mistake as the gyn says the lack of estrogen brought on the LS. What I don't understand is if that's the case, why are people with LS not helped by using hormone cream?

I thought there was also a blood test for herpes antibodies. Wouldn't that be less obtrusive for car?

Hi bev

Undesirable is exactly how I feel i am 27 and have had this for around 3/4 years. The side of my vulva that has LS has changed in shape. My skin seems to bother me daily. Whilst on holiday last week i had a really bad flare up. Flare ups tend to make me extremely anxious / paranoid. Ive used steroid creams on and off but decided not to bother as id give up hope they didnt seem to help. I had heard about blood tests for herpes i have an app on the 14th but my flare up has calmed down now. Im going to try and go to a walk in clinic on wednesday. If i have no cuts im going to request bloods.

yeah 100% it concerns me in terms of sexual function long term and being desireable to my husband, i still want to have another child at some point too but also when i first had these symtpoms everyone's first thought is that i have some terrible std or someone has been unfaithful etc there is just a lot of taboo with issues in the genital area

yes there is a blood test for herpes antibodies but pretty much all of us have come in to contact with HSV1 or 2 at some point in our lives so it wouldn't confirm the virus is present genitally, someone who had a coldsore would be positive for antibodies and also even more confusingly 80% of the people who have herpes are asymptomatic so they would have antibodies but no symptoms...its a sneaky little virus!

it is also worth adding whilst we are talking about viruses, i have read a lot that HPV virus can cause tiny cuts too and everyone who has been sexually active has come in to contact with HPV and i'm almost certain that can be swabbed for if requested

Yes for once im hoping i have cuts so i can get them swabbed and get this worry off my head. Im thinking about getting CBT to help with mg anxiety/itching but i wasnt sure how effevtive it would be?

hi car just read my response to bev below because herpes blood tests are highly inaccurate due to the fact that they only show antibodies present and most of us have developed antibodies from coming into contact with a coldsore for example, its a common misconception that hsv1 causes coldsores and hsv2 causes genital herpes-you can have both in both locations

so basically my point is that even if you got a positive result for HSV1 or 2 it wouldnt confirm where in your body or that your vulval issues are down to that - just bear that in mind xxxx

Yes but the results would be more reliable if i got my cuts tested right? Xx

i do believe so yes, usually there has to be fluid inside the blister to test so it can sometimes be harder to culture that from a paper cut type lesion for herpes. herpes usually has other symptoms like tingling, flu like feelings, and usually "outbreaks" for 1-2weeks and then resolves completely until another outbreak if there is ever going to be another one at all.

i have heard of people receiving pyscho sexual therapy becauase of the affect LS has had on their lives. and it is an obvious cause of anxiety so i believe CBT would help. i would be interested in that too!

CBT could only be a positive. Nothing to lose and only less anxiety as a gain. I say go for it if it's available to you.

Also meditation. Anxiety and stress will only exaggerate symptoms.

Hope to hear back how you did with it.

car, do you and your husband talk about it? If you don't it will become an 800 lb gorilla in your relationship and much more magnified in your mind. As a couple you are in things together. This is a health issue. Do you share what details you have learned? Maybe a visit with you to the doctor would help if you need support talking with him about it.

Remember, this is not a communicable disease. I see it as very similar to psoriasis.

Try to be positive. In the grand scheme of things this is something you will be able to deal with, I'm sure.

B.

Best advice given , hear hear

Hi Beverly, my general observation is that it is all too often the case that Medical Professionals have no knowledge of the various Lichen disorders and that this leads to sufferers not getting the help they desperately need.

Fortunately, there seems to be more mentions on here of Vulval Skin Disorder Specialists so that women can eventually get the help they need and a correct diagnosis made. Although, I do not know how commonly available Vulval Specialists are here in the UK within the NHS ....

In terms of my own case, my LS had been developing for some years I suspect, and may even had its beginnings in my late teenage years. I had been searching for the 'just the right' skin cream, or so I thought at the time, to help with the highly irritated skin on my penis. All of this occurred at probably the most stressful period in my life my my working life was drawing to a conclusion, I was around 55 YOA at the time.

I had been seeing GP's regularly for sometime regarding the stress and various means of treatment, but the skin of my penis became a horrendous mess and when I consulted a GP about it they immediately referred for an earliest possible appointment with a Dermatologist fearing I may have Penile Cancer. The relatively mild Steroid the GP had given me had significantly reduced the symptoms but the Dermatologist asked me to return for a Biopsy to be conducted and this subsequently confirmed LS.

I fully agree with your reasoning and recommendations you have specified above for car ....

WD, I have never been to the UK and know little of the workings of the NHS , but from what I've read on this forum it sounds as if may be wanting. A main difference seems to be you all have access at least to some care if not always timely or quality care. The US has, as they say, the best health care money can buy. The Affordable Care Act ( which Trump and the Republicans have been trying to dismantle since its inception) is at least a beginning for us. We have far to go, but at least there's hope for all Americans, not just those who have the money to access to good care.

I'm sure the numbers of males with LS is extremely low so I don't doubt you were not properly diagnosed for many years. I almost think we should be starting an LS Awareness Campaign! Unfortunately, the fact that it most commonly affects genitals clearly makes it an embarrassing topic. Who knows the number of people who suffer from it and don't ever go to see a doctor to be examined!

Ironically, I think we can count ourselves among the lucky ones. We've been properly diagnosed by specialists and have access to what information and care is available at this time. Having a forum like this and access to the internet is a godsend. A community of the afflicted! It's probably easier for me to be more less stressed and more hopeful because I haven't suffered the way others do (so far at least). But I do think we have to remind ourselves that there are people who have far worse health issues. We have to put things in perspective and, as you folks in the UK say, carry on.